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Shame, depression and self-care in emerging adults with type 1 diabetes

By Alice Turland

Submitted for the Degree of

Doctor of Psychology(Clinical Psychology)

School of PsychologyFaculty of Health and Medical Sciences

University of SurreyGuildford, SurreyUnited KingdomSeptember 2016

1

Abstract

Objective: Consistent self-care is vital to maintaining good health and quality

of life for people with type 1 diabetes (T1D), as well as avoiding life-limiting

conditions. Evidence suggests depression impacts on T1D self-care, but research into

what might influence this is lacking. The aim of the current study was to explore

whether shame-proneness predicts diabetes self-care in an emerging adult population

and whether this relationship is mediated by depression. Method: 292 participants

between the ages of 16 and 25 and with T1D took part in an online survey. They

completed measures of shame-proneness, depression and adherence to diabetes self-

care activities, and provided their most recent HbA1c reading. Results: As

hypothesised, all four shame subscales showed a significant correlation between high

shame and low self-care. All four types of shame evidenced some partial mediation by

depression, though this was only marginal for diabetes shame. There was evidence of

stronger mediation by depression in the models of behavioural and character shame.

For the models assessing diabetes-related and body shame on self-care outcomes, the

direct effect of shame generally remained significant. HbA1c levels in the sample

were high (mean=64 mmol/mol) and uptake of attendance at structured diabetes

education courses was low (40%). Conclusion: Preliminary support was found for a

model whereby diabetes and body shame directly affect T1D self-care in emerging

adults. Depression remains an important factor in T1D self-care and for some may be

influenced by character and behavioural shame. Potential ways of reducing shame for

people with T1D are discussed. Further research is needed to establish causality and

measure factors which may play a role in triggering and maintaining shame.

2

Acknowledgments

Countless individuals have supported me on my journey to become a Clinical

Psychologist, and unfortunately naming each individual is beyond the scope of these

acknowledgements. I would, however, like to acknowledge the groups of people who

have helped to shape my training experience and without who I would not be in this

position today.

Firstly, and most importantly, I would like to thank the service users, patients and

clients (however they wish to define themselves) with whom I have worked across

each of my placements. I have borne witness to stories of the best and worst of

humanity, have spoken with people at their lowest ebb and been amazed and humbled

by the resilience that people can summon even in the darkest of places. I have learnt,

from you, how to be a better Psychologist and also how to be a better person and I am

forever grateful for the opportunity to work with you. I hope that you are all able to

find and sustain some level of happiness and meaning in your lives, and that our brief

time together played some part in helping you towards this.

Secondly, I would like to thank my Supervisor’s for supporting me through my

placements and teaching me new ways of working. I have taken something from each

of you and hope I can continue to combine this, once qualified, into my own way of

working. In particular, I would like to thank those Supervisor’s, and colleague’s, who

modelled to me how to achieve a work life balance and the importance of recognising

when to lower ones expectations of oneself in order to sustain a healthy approach to

the profession.

3

Thirdly to Cohort 42, with whom I have shared the ups and downs of the last three

years of training. We got through it as a group, with hard work and a healthy sense of

humour.

With specific regard to my research, which takes up a significant part of this portfolio,

I would like to thank Dr Laura Simonds for her supervision, critique and

encouragement throughout the entire process; from discussing ideas to writing up the

final portfolio. I would also like to thank Dr Mary John and Dr Debbie Cooke for

their thoughtful input and advice.

The study would not have been possible without the support of the Diabetes Online

Community, many of whom not only participated but also shared with their peers and

offered advice about further avenues for recruitment. The charity Diabetes UK were

also invaluable in supporting and advertising on my behalf.

Lastly I would like to extend a more personal thanks to my family and friends for the

support and encouragement they have shown me over the years. To my parents, who

always showed a limitless belief in what I could achieve. And finally, I would like to

thank my fiancé, Jak Swain, for his support, patience and well-timed texts of

inspirational quotes. I certainly would not be in this position without you and I cannot

wait to begin the next chapter of our lives together.

4

Research

1 MRP Empirical Paper (including Abstract)

2 MRP Empirical Paper Appendices

3 MRP Proposal (without appendices)

4 MRP Literature Review (with appendices)

Clinical Experience A brief overview of my 3 years’ of clinical experience.

Assessments Titles of all your academic assessments

Contents of portfolio

5

Empirical Paper

Shame, depression and self-care in emerging adults with

type 1 diabetes

Alice Turland

Word Count (excluding reference list, appendices and abstract)

9628

Journal Choice

Journal of Health Psychology (APA).

“Health Psychology” is an international APA journal. It.was chosen as the target journal to reflect the papers key focus on engagement with diabetes self-care and the psychosocial factors involved in this. Further detail about the journal can be

found in Appendix Q.

6

Abstract

Objective: Consistent self-care is vital to maintaining good health and quality

of life for people with type 1 diabetes (T1D), as well as avoiding life-limiting

conditions. Evidence suggests depression impacts on T1D self-care, but research into

what might influence this is lacking. The aim of the current study was to explore

whether shame-proneness predicts diabetes self-care in an emerging adult population

and whether this relationship is mediated by depression. Method: 292 participants

between the ages of 16 and 25 and with T1D took part in an online survey. They

completed measures of shame-proneness, depression and adherence to diabetes self-

care activities, and provided their most recent HbA1c reading. Results: As

hypothesised, all four shame subscales showed a significant correlation between high

shame and low self-care. All four types of shame evidenced some partial mediation by

depression, though this was only marginal for diabetes shame. There was evidence of

stronger mediation by depression in the models of behavioural and character shame.

For the models assessing diabetes-related and body shame on self-care outcomes, the

direct effect of shame generally remained significant. HbA1c levels in the sample

were high (mean=64 mmol/mol) and uptake of attendance at structured diabetes

education courses was low (40%). Conclusion: Preliminary support was found for a

model whereby diabetes and body shame directly affect T1D self-care in emerging

adults. Depression remains an important factor in T1D self-care and for some may be

influenced by character and behavioural shame. Potential ways of reducing shame for

people with T1D are discussed. Further research is needed to establish causality and

measure factors which may play a role in triggering and maintaining shame.

7

Introduction

It is estimated that 3.2 million people in the UK have a diagnosis of diabetes;

around 10% of these have type 1 (T1D). T1D is most commonly diagnosed between

the ages of 10 and 14, meaning that the majority of sufferers have added pressure in

their adolescent years of adapting to managing their condition (Diabetes UK, 2014).

Self-care for people with T1D requires a high level of responsibility on the part of the

individual. Self-care routines can involve daily dietary and lifestyle changes,

carbohydrate calculations, multiple blood glucose tests and self-injecting of insulin

(National Institute for Health and Care Excellence, 2015a).

Typically, when first diagnosed, parents take on at least partial responsibility

for T1D self-care. The age at which full responsibility shifts to the young person

differs depending on the individual. In one qualitative interview study, adolescents

described transitioning to independent self-care as a complex and gradual process.

Many factors played a role in successful transitioning; maturity, peer acceptance, and

support and validation of the young person making their own decisions, both by

parents and healthcare professionals (Karlsson, Arman, & Wikblad, 2008).

To add to the complexity, the transition to independent diabetes self-care is

embedded within the context of typical adolescent developmental processes such as

developing and exploring self-identity (Erikson, 1968). Learning to adjust to

independent self-care is likely to take place at a time when young people are

exploring some activities for the first time such as using alcohol and drugs and buying

food when out with friends. Each of these activities can lead to poor glucose control,

perhaps by two different routes. Firstly, a young person’s lack of experience with new

activities may mean they lack the knowledge and skill to effectively adjust their

8

insulin and/or carbohydrate intake to accommodate these activities. Secondly, even if

they possess the knowledge around what should be avoided and what can be adjusted

for, they may ignore this advice in favour of wanting to fit in amongst their peers.

Adolescents with diabetes are likely facing the tension between fitting in with peers

and achieving optimum health on a daily basis.

The HbA1c blood test is the measurement most widely used by healthcare

professionals to indicate average glycaemic control over the preceding 2-3 months.

When mapped over time, a pattern emerges of worsening glycaemic control during

early adolescence, peaking and stabilising between the ages of 17 and 19, followed by

a gradual improvement into young adulthood (Bryden et al., 2001; Clements et al.,

2015). However, despite this promising improvement in early adulthood, Clements et

al (2015) found that, amongst their sample, the average HbA1c of 26 year olds

remained above recommended levels. There was also a large degree of variation,

suggesting that individual differences play a vital role in individual trajectories of

glycaemic control during this sensitive time (Clements et al., 2015).

Difficulties arising from poor glycaemic control extend beyond the day-to-day

challenges of headaches, tiredness and poor concentration resulting from mild

hypoglycaemia and hyperglycaemia (Diabetes UK, 2015). Complications vary from

immediate and life-threatening conditions such as diabetic ketoacidosis, to chronic

health problems leading to heart disease, stroke and retinopathy (NHS Choices, 2013;

NHS Choices, 2015).

A review of the literature highlighted a number of commonly cited reasons for

not adhering to diabetes regimens. This included fear of inadvertently causing

hypoglycaemia, a dislike of needles, and a lack of understanding of complex self-care

9

regimens (Odegard & Capoccia, 2007). One study found that 35% (n=87) of 11-25

year olds reported purposefully omitting insulin in order to lose weight (Peveler et al.,

2005). Understanding more about the cognitive and emotional factors that play a role

in self-care is vital in order to offer appropriate support for people struggling with

self-care. The current study aimed to explore the role of shame as a potential

contributing factor towards variability in diabetes self-care, and consequently

glycaemic control, for emerging adults with T1D.

Emerging Adulthood

Arnett (2000) defined the concept of “emerging adulthood” as the transitional

period from adolescence to adulthood. In Western cultures this stage represents the

time following compulsory schooling, where young people may be continuing into

further/higher education/training independent of adult supervision, but not yet

burdened by full adult responsibility. Arnett argues that whilst identity exploration

typically begins in adolescence, it is usually not resolved until the emerging adulthood

stage, when increased independence from the family of origin opens up exposure to a

broader range of world-views and opportunities. Palladino et al (2013) suggest that

this period generates particular problems for those with T1D. Parental supervision of

self-care routines most likely cease completely and further challenges to the treatment

regimen are likely to arise, such as cooking for oneself for the first time and travelling

independently. Of particular concern is the finding that, despite the considerably

greater risk to health, in one study, there was no difference in self-reported binge

drinking or smoking between an emerging adult sample with and without diabetes

(Palladino et al., 2013).

10

In 2011 the American Diabetes Association (ADA) released a position

statement highlighting the challenges facing emerging adults transitioning from

paediatric to adult healthcare services. They noted the challenges of moving to adult

health services which usually offer shorter appointments and expect patients to act

more autonomously in their decision-making regarding treatment and lifestyle. In the

US there is the additional issue at this age of changes in health insurance, sometimes

leading to dangerous gaps in provision (Peters, Laffel, & American Diabetes

Association Transitions Working Group, 2011).

Similar issues are likely a factor in the UK. In a recent multi-site UK

qualitative study young people and their parents frequently reported less support in

adult services, often seeing a different consultant on each visit (Kime, 2014). There is

a recognition of transition issues in the recently updated UK National Institute for

Health and Care Excellence (NICE) guidelines which advises flexibility in the age of

transition, to allow for individual differences in emotional maturity and general life

stability (NICE, 2016).

The period of emerging adulthood is problematic to define precisely, as the

development of independence can be a gradual process, which begins and ends at

different times depending on the individual and their social and cultural context.

Although Arnett defines emerging adulthood as occurring between the ages of 18-25,

Clements et al’s (2015) results suggest that, for some, a stabilisation of glycaemic

control begins at around the age of 16. However this is by no means the case for

everyone, and an understanding of which individual factors differ between those who

begin to stabilise their glycaemic control, and those who do not, is vital in targeting

support to those who need it.

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The increasing independence that defines the emerging adult period is likely to

begin before the transition of moving home. This is at a time when those in late

adolescence may still live with parents but begin to make decisions about their futures

and venture out independently with friends. Indeed many new situations that may

affect glycaemic control may begin to occur before an adolescent leaves home, such

as drinking alcohol and purchasing food independently. Additionally, the transition to

adult services in developed countries is encompassed during this time period. It is for

these reasons that the current study focussed on 16-25 year olds.

Diabetes and mental health

Diabetes has been linked to an increased prevalence of eating disorders (Jones,

Lawson, Daneman, Olmsted, & Rodin, 2000) and depression (Mommersteeg et al.,

2013) as well as directly causing anxiety issues that people may otherwise never have

had to face, such as needle phobias and fears of hypoglycaemia. Depression is the

mental health problem most commonly linked to diabetes, with current estimates

placing those with diabetes at roughly twice the risk of those without for developing

depression (Mommersteeg et al., 2013). However despite widespread occurrence, the

reason for this increased risk is not clear-cut.

Qualitative studies provide an insight into the experiences of young people

with type 1 diabetes and a starting point to consider the psychosocial factors that may

be involved in the link between depression and diabetes. Feeling isolated from peers

(Kime, 2014), noticing fear in parents and other people, disliking authoritarian stances

from health care professionals and the increased complexity of negotiating

independence from parents (Scholes et al., 2013) were all raised as themes by young

people when asked about their experience of diabetes. Interpersonal conflict is a

12

commonly cited trigger for depression (Frone, 2000; Sheeber, Hops, Alpert, Davis, &

Andrews, 1997), and diabetes certainly has the potential to create conditions in which

conflict could occur. The fear noticed in parents may develop into overprotectiveness,

and eventually conflict, when the young person either purposefully or accidentally

makes an unwise condition self-care decision.

A large scale qualitative study across adults with both type 1 and type 2

diabetes also reported, alongside experiences of fear related to risk of hyperglycaemic

or health complications, a general sense of hopelessness related to their condition

(Stuckey et al., 2014). It may be that the fear of future complications, in conjunction

with repeated past experiences of difficulties controlling the condition, leads to a

sense of hopelessness, and subsequently depression, in some people with diabetes.

Another possibility for the increased prevalence of depression is that the

physical symptoms of low or high blood sugar in people with diabetes, such as

tiredness and irritability combine to trigger experiences of low mood and, over a

prolonged period, depression. Biological explanations go one step beyond this to

highlight similar neurological and endocrinological mechanisms potentially

underlying both conditions and thus the presence of one automatically increases the

likelihood of developing the other (Korczak, Pereira, Koulajian, Matejcek, & Giacca,

2011).

A recent study found that although people with diabetes scored more highly on

depression measures than healthy controls, the proportion of somatic to

cognitive/affective symptoms was no higher in those with diabetes (Stewart et al.,

2011). Furthermore, Seigel, Golden, Gough, Lashley and Sacker (1990) found a larger

difference in reported psychological symptoms than somatic symptoms in a diabetic

13

group compared to a healthy comparison group, supporting a substantial role for

psychosocial factors.

The factors underpinning the co-occurrence of diabetes and depression are

likely multifaceted and require a biopsychosocial model. Of course, for some people

diabetes may play little or no role in their depression, the latter instead being related

to other difficult life experiences. However, whatever the cause, depression is of

particular importance in diabetes research, because it has frequently been associated

with hyperglycaemia (Lustman et al., 2000).

Diabetes self-care and mental health

Mental health issues such as needle phobia and eating disorders not only link

directly to T1D but also point to relatively straightforward mechanisms by which

glycaemic control is affected (i.e. through avoidance of injecting insulin or overusing

insulin in order to lose weight). The way in which depression links to poorer

glycaemic control is less straightforward as avoidance of self-care could be for a

variety of reasons inherent in depression. These include low motivation, being

unwilling to inject in public, denial, poor memory, or in an attempt at suicide. From a

biological perspective, there is also an argument that the same underlying mechanisms

may occur in both diabetes and depression and therefore it is possible that those with

poorer glycaemic control are likely to experience more severe depression irrespective

of engagement in self-management (Korczak et al., 2011).

Support for the behavioural and motivational impact of depression on self-

management were shown in a review that highlighted a significant negative

association between depression and diabetes self-care across a number of studies

14

(Gonzalez et al., 2008). It follows that the decrease in motivation that so often forms

part of depression would affect the degree to which an individual could adhere to a

complex and intensive daily self-management routine. A cognitive factor that

potentially exacerbates this relationship is self-efficacy (i.e. the belief that one is

capable of instigating change). If an individual lacks a sense of self-efficacy in

relation to their diabetes, motivation is likely to be reduced, further reducing the

likelihood of attempting to engage with condition self-management. Hopelessness

about the future is also likely to impact on self-efficacy. Evidence for the role of self-

efficacy in diabetes self-care was shown in one study amongst a group of emerging

adults. Self-efficacy specifically related to diabetes partially mediated the link

between impulse control and diabetes self-care (Stupiansky, Hanna, Slaven, Weaver,

& Fortenberry, 2013).

There is a wealth of research on cognitive and biological factors in depression

and diabetes but relatively less attention has been paid to emotional factors. Given the

powerful effect that negative emotional states can have on memory, behaviour and

thinking abilities, further exploration of the role of emotion and its interaction with

cognition is important.

Shame

Within society, the word “shame” is often used interchangeably with other

self-conscious emotions such as guilt or embarrassment (Tangney, Miller, Flicker, &

Barlow, 1996) or in the case of biblical shame, to imply a severe wrongdoing that in

some way damages the internal self and requires the individual to repent. Within the

15

social sciences, however, shame is seen as a complex negative experience, often

linked with reactions to trauma, experience of anxiety and depression (Feiring, Taska,

& Lewis, 2002; Gilbert, 2000).

Shame can be described as both a self-conscious and socially conscious

emotion: entirely linter-woven with ones sense of self, yet experienced through the

eyes of an internalised other (Tracy & Robins, 2007b; Lewis, 1971; Gilbert, 2011) .

This experience involves not only affect but also a negatively laden cognitive

appraisal of the self in relation to the situation at hand (Tracy & Robins, 2007b). In

other words, the individual is aware of not being as they wish to be, or as others

which them to be in a situation, and the reason for this is perceived as an internal,

stable defect.

In traditional Beckian cognitive theory, repeated negative appraisals stem from

underlying stable, negative beliefs about the self (Beck, 1991). Shame-related sets of

beliefs have been theorised as one type of early maladaptive schema, developed

during childhood through the prolonged or repeated experience of rejection (Young,

Klosko, & Weishaar, 2003). When an individual experiences a current situation as

similar to these early experiences, there is a risk the schema is activated, with the

emotional experience of shame as one consequence of this.

A key feature of shame is the motivation to hide the perceived defective self

through avoiding others (Tangney et al., 1996). Gilbert (2011) proposed that the sense

of threat appraisal inherent in shame has evolutionary roots. As humans evolved as

social beings, belonging to a group was advantageous and offered safety, whereas

becoming aware of being rejected from the group and being seen as unacceptable by

others was potentially life threatening. Gilbert describes external shame as that which

16

is perceived as coming from the social group, interacting with an internal sense of the

self as inherently shameful.

Several theorists construe shame-proneness as a general propensity to feel

shame. Andrews, Qian and Valentine (2002) argue that shame may not be felt

globally by an individual, but rather in relation to certain aspects of themselves. On

the basis of this assertion, they developed the Experience of Shame Scale to assess

body, character and behavioural shame as three separate, but linked, domains of the

shame experience.

For an adolescent or emerging adult coming to terms with a chronic condition

that marks them out as different from their peers, and limits what they can do, there

may be a vulnerability to experiencing shame. A social risk may arise where an

emerging adult with diabetes may be forced to choose between activities congruent

with peer acceptance but incongruent with diabetes self-management, such as

drinking excessive alcohol. It may be that this social risk results in direct avoidance of

diabetes self-management.

It may also be that shame directly impacts on self-care following repeated

difficulties in maintaining HbA1c at recommended levels, as is common in

adolescence. This may be brought to the foreground by well-meaning and concerned

diabetes healthcare professionals during consultations. In one qualitative study that

interviewed patients with hypercholesterolemia, shame emerged as a theme in relation

to the emotions experienced by some when clinicians commented on their diet or

cholesterol test results (Frich, Malterud, & Fugelli, 2007). Furthermore Archer

(2014) discusses how Clinicians may inadvertently create a context for future shame

by praising people with T1D who manage their diabetes well and appear to be “ideal”

17

patients; an accolade that may be immensely difficult to maintain. In observing GP

consultations in Denmark, Guassora, Reventlow and Malterund (2014) commented on

the patients’ discourse of achievement in relation to lifestyle factors, which they

labelled on a continuum from honour to shame. It may be that repeated exposure to

healthcare consultations experienced as shameful results in an escape or avoidance

reaction, with the individual beginning to avoid aspects of self-care which have

become associated with shame. Furthermore Terry and Leary (2011) argue that self-

compassion (incongruent with shame) mediates self-regulation of health behaviours at

every stage from being able to set more realistic goals, to an increased ability to

recover from a lapse. By implication, shame is likely to interfere with self-regulation.

Shame has consistently been associated with depression (Andrews et al., 2002;

Cheung et al., 2004). As noted above, both are promoted by similar attribution styles.

One longitudinal study highlighted shame-related schemas as being predictive of

severity of depression nine years later, suggesting that a belief about oneself that

evokes shame may pre-date depression (Halvorsen et al., 2010). Therefore, as well as

shame having a potentially direct effect on condition self-management as noted

above, it may also be that depressive affect mediates the relationship between shame

and self-care. For example, shame-related depressive affect might decrease

motivation and produce problems with memory. It might also increase risk of

hyperglycaemia through the physiological effects of stress (Diabetes.co.uk, Diabetes

Digital Media ltd, 2014). For those who are already prone to experiencing shame,

adjusting to diabetes self-management may be a perfect storm, inducing shame related

affect and cognitions, which in turn enhances negative affect and reduces, both

directly and indirectly the chances of engaging in condition self-management.

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Summary

Consistent self-care is vital to maintaining good health and quality of life for

people with diabetes, as well as avoiding life-limiting conditions. The emerging adult

years are important for laying down the foundations for lifelong management.

Independent diabetes self-care can be challenging for young people. Evidence

suggests depression impacts on diabetes self-care, but research into why this might be,

or what might influence this is lacking. Shame is a complex emotional and cognitive

experience that has been consistently linked with depression, and may arise in young

people with diabetes who perceive themselves as different from their peers, or who

experience advice about their condition self-management as shame inducing. The aim

of the current study was to explore whether shame-proneness predicts diabetes self-

care and whether this relationship is mediated by depression.

Main Hypotheses

1. High shame-proneness will be related to poorer diabetes self-care (i.e. lower

adherence to self-care activities and higher Hba1c level)

2. Depression will partially mediate the relationship between shame and self- report

indices of diabetes self-care.

Method

Participants

Participants were recruited from several sources. Advertisements were posted

on a number of diabetes specific social media groups, from the UK, USA, Australia,

New Zealand and Ireland, as well as being shared through the author’s own social

19

network. The charity Diabetes UK advertised the study through their magazine,

website and social media accounts. Posters and flyers were distributed throughout the

University of Surrey campus, in public places and on the noticeboards of local

businesses (Appendix A). Lastly participants were encouraged to share the study with

further potentially eligible parties. The inclusion criteria stipulated that participants be

between the ages of 16 and 25 (inclusive) and have a diagnosis of Type 1 diabetes.

Due to the online format of the study and the form of the questionnaires used,

participants were also required to be able to read and understand English.

Procedure

The University of Surrey Faculty of Arts and Human Sciences Ethics

Committee granted the study a favourable ethical opinion (Appendix B).

Participants accessed the online survey by following a link placed in the

advertisements, leading to a comprehensive information screen (Appendix C). This

detailed the broad nature of the study (emotions and diabetes self-care) including the

general requirement for participants to look inwards and consider their own

potentially difficult emotions. Following this, the consent screen specified how

personal information would be used and participants were prompted to indicate their

consent in order to continue (Appendix D).

The survey then began with a statement normalising non-adherence to self-

care routines, and encouraging participants to answer honestly (Stenner et al, In

preparation; Appendix E). Initial demographic and diabetes-specific questions (such

as age at diagnosis) provided information necessary to describe the sample (Appendix

F). Two questions were taken from Stenner et al (In preparation) following

20

consultation with an author (Appendix G). Participants were then prompted to answer

the specific outcome measures in the order stated below. The opportunity was given

to receive a summary of the study findings once complete. Email addresses were

gathered for this purpose only and were stored in a separate data file to ensure

participant anonymity.

Following the demographic section of the survey, a prompt was given at the

end of each page asking participants if they wanted to continue. If they clicked “no”

to this question, they were taken to the standard debrief screen (Appendix H). This

gave further details about the study, normalised the experience of low mood within

diabetes and encouraged participants to contact their healthcare professional if they

noticed a problem with mood or self-care. This was followed by a list of mental health

and diabetes resources. The same screen appeared for participants who completed the

survey.

Measures

Predictor variables: Shame and Depression

Experience of Shame Scale

(ESS; Andrews, Qian & Valentine; Appendix I)

The ESS is a 25-item questionnaire that measures shame-proneness across

three domains: body, character and behavioural. Character shame focusses on shame

associated with who the individual is as a person. For example, the respondent is

asked about shame associated with their “manner with others”. The behavioural

domain looks specifically at shame associated with what one does, such as “doing

something wrong”. The body shame domain refers to shame about one’s body (or part

21

thereof). For each subscale, questions are asked that address the affective, cognitive

and behavioural (e.g. concealment) aspects of the shame experience. The respondent

is asked to consider how they have felt over the last year and rate each item on a likert

scale of 1 (not at all) to 5 (very much). Higher scores indicate higher shame. Due to

the variability in number of items per subscale, subscale item means are presented for

comparison.

Good construct validity and internal reliability have been shown for both the

total scale and the three subscales with an undergraduate student sample. Furthermore

the high test-retest reliability, over an 11-week period, suggests that the ESS is likely

to be measuring shame-proneness rather that transient states of shame (Andrews et al.,

2002).

With the author’s permission, a further 7-item diabetes shame scale was

developed for the purpose of this study (Appendix J). This asked questions in the

same format of affect, cognition and behaviour, in relation to two aspects of diabetes:

engaging in self-care and experience during healthcare consultations.

Depression Subscale of the Depression Anxiety and Stress Scale

(DDASS; Lovibond & Lovibond 1995; Appendix L)

The DASS-21 is a 21-item, self- report scale comprising of three subscales

measuring depression, anxiety and stress. Each of these subscales are designed to

measure on a continuum, rather than publishing cut-off points for diagnosis. A

separate score is given for each of the subscales. Factor analysis has confirmed the

existence of the three factor structure.

22

In the present study, only the depression scale was used comprising 7 items

(DDASS). Good convergent validity has been shown between the depression subscale

and the Beck Depression Inventory (Beck et al., 1961; Lovibond & Lovibond, 1995).

Responses for each item were on a likert scale ranging from 0 (did not apply to me at

all) to 4 (applied to me very much or most of the time). Scores can range from 0 to 21,

with higher scores indicating higher depressive affect. The DDASS has the benefit of

focussing on the affective and cognitive elements of depression, thus reducing the

likelihood that somatic symptoms commonly associated with diabetes, such as poor

sleep and fatigue, would affect the results.

Criterion Variables: Self-care and glycaemic control

Self-Care Inventory- Revised (SCI-R; Weinger, Butler, Welch & La Greca,

2005; Appendix K)

This 15-item measure asks participants to rate their diabetes self-care on a

series of 5-point likert scales, varying from 1- “never do it”, to 5- “always do it as

recommended, without fail”. Scores are presented and used in analysis as average

item means. This is to account for the 4 questions which had a “not applicable”

option; scoring these as zero would otherwise bias the results.

Items measure the main aspects of diabetes self-care such as diet, exercise,

glucose monitoring and insulin administration. Weinger et al. (2005) developed the

SCI-R from the original SCI, the latter being developed for use with adolescents and

their parents. The adult-focussed SCI-R was chosen for use in the current study as the

age range under investigation (16-25) more closely represented a young adult

population as opposed to an adolescent one. Given the SCI-R is for completion by

23

adults, parental reports are not included. The SCI-R showed high internal consistency

(α =0.87) at initial validation and concurrent and convergent validity with existing

measures in the expected directions (Weinger et al., 2005).

Self-reported Glycolated Haemoglobin levels (Hba1c)

Hba1c is routinely assessed by blood tests at diabetes check-up appointments.

HbA1c gives diabetes clinicians an index of average plasma glucose concentration

over the preceding two or three months and, therefore by implication, an estimation of

the individuals engagement in diabetes self-care. In 2011 the UK transitioned to

reporting Hba1c in the worldwide standard International Federation of Clinical

Chemistry (IFCC) units of mmol/mol. However reporting using the prior percentage

system may still occur (Abbott Diabetes Care, 2015).

In practice patients are often given an individual numerical Hba1c target,

particularly if they are at risk of hypoglycaemia: very low blood glucose levels.

However, in order to avoid long term diabetic complications associated with sustained

hyperglycaemia (high blood glucose levels), achieving a value of less than 48

mmol/mol is considered to be indicative of good diabetes control and is the general

recommended clinical target for adults (National Institute for Health and Care

Excellence, 2015b). However any reductions are generally considered to reduce the

risk of complications associated with hyperglycaemia (Diabetes UK, 2016a).

Therefore HbA1c was presented as a continuous variable in the form of HbA1c scores

(mmol/mol).

HbA1c is widely used in research as an indicator of diabetes self-care.

However, given that Hba1c may be influenced by other factors, such as

24

appropriateness of medication and additional illness (Diabetes Digital Media ltd,

2014), it is used in conjunction with self-reported self-care in the current study.

Data Analysis

Hypothesis 1, which focused on assessing the relationship between measures

of shame proneness and self-care indices (Hba1c levels, SCI-R scores; both

continuous variables) was tested using Pearson’s correlations. Hypothesis 2 was

tested using mediation analysis. The method of bootstrapping was chosen as a more

valid alternative to Baron and Kenny’s (1986) traditional causal steps analysis,

yielding both a lower chance of Type 1 error, and higher power (Hayes, 2009).

Hayes’ PROCESS macro was used to test simple mediation.

The first model contained diabetes shame as the predictor, self-care (SCI-R) as

the outcome (continuous), and depression (continuous) as the mediator. Mediation

analysis was then repeated with the remaining shame subscales (body, character and

behaviour) as the predictors. All models were then analysed with self-reported HbA1c

(continuous) as the outcome. Figure A below represents the relationships tested:

Figure A – Mediation paths tested

Depression (DDASS)

Results

25

Self-care (SCIR/HbA1c)

Shame

(ESS subscales)

Overview

Firstly, total participant numbers at each stage of analyses are described and

the criteria by which participants were included clarified. An overview of participant

demographic characteristics, first generally and then diabetes specific, is given. This

is followed by an overview of means, distribution and reliability for all measures. The

analysis regarding Hypothesis 1, relating to the potential association between shame

and self-care, is then presented. Each ESS subscale is considered, firstly with SCIR

scores as the dependent variable, followed by Hba1c level. Hypothesis 2, which

suggests depression as a mediating factor between self-care and shame is then

addressed through mediation.

Participants and missing data

In total, 354 participants began the survey. Ten were screened out based on the

exclusion criteria for age (n=8 >26 years old) and type 1 diabetes diagnosis (n=2

without T1D). In order to be included in some analyses, participants needed to have

completed a self-care measure (either the SCI-R or HbA1c value) in addition to a

predictor variable (DDASS or ESS subscale). Fifty two participants did not meet this

minimum completion rate, so were excluded on this basis. This left a total of 292

participants.

Some participants dropped out before the end of the survey (n=11) but the

decision was taken to include the data for completed measures as consent for use of

data up to that point had not been withdrawn. Two hundred and four participants

indicated they knew their latest HbA1c value and reported it. Of these, three HbA1c

26

values were excluded as they were accompanied by language indicating that the

respondent was not sure (e.g. “about”). This left 201 HbA1c values.

In order to avoid biasing the data towards those who had completed the survey

with great care, individual subscale mean replacement was used for two cases that had

one missing item each. These occurred on the character shame subscale and the SCI-

R.

Between 90 and 196 participants is sufficient to detect a medium effect size in

a mediation analysis (alpha = .05) at 80% power (Fritz & Mackinnon, 2007), so the

final participant number for all analyses yielded good power.

27

Table 1

Summary of participant demographicsAge % of sample (n)

20.76 (2.78) a

Range 16-25

GenderMale 18.8 (55)

Female 81.2 (237)Occupation

Student 52.4 (153)Employed full time 32.5 (95)Employed part time 6.8 (20)

Self-employed 1 (3)Occasional/ casual work 2.1 (6)

Other 5.1 (15)Country of residence

UK 80.5 (235)Non-UK 19.5 (57)

Live with parents

60.6 (177)

EthnicityWhite 92.8 (270)

Mixed/multiple ethic groups 4.1 (12)Asian/ Asian British 1.7 (5)

Black/African/Caribbean/British 0.7 (2)Other ethnic group 0.7 (2)

Mental health

diagnosis bCurrent diagnosis 19.5 (57)

Past diagnosis (not including current)

10.3 (30)

Anxiety/ depression 18.6 (54)Eating disorder 2.05 (6)

Personality disorder, psychosis or trauma

2.05 (6)

Neurodevelopmental 0.68 (2)a =Mean (SD), b=Some participants had several diagnoses, the percentages represent diagnoses in the over-all sample, not cumulative individuals.

28

The participants were predominantly white, female and UK residents. As

recruitment involved advertising on non-UK based social media groups, a minority of

participants resided outside the UK. Around half of the participants indicated that they

were students. This is to be expected given the target age range of the study.

Around one fifth of the sample indicated that they had a current diagnosis of

anxiety or depression. Several participants indicated they had been given more than

one mental health diagnosis.

Table 2 shows diabetes-specific demographics.

Table 2

Diabetes-specific demographic variablesRegimen % of sample (n)

MDI* 64.7 (189)Pump 34.9 (102)Other .3 (1)

Age diagnosed a11.57 (5.82)

Range (years) <1 – 25Diabetes duration a

9.20 (6.06)Range (years) <1 – 25

Manage diabetes independently from parents

74 (216)

Parents always attend appointments 19.5 (57)

HbA1cKnown 71.2 (208)Not known 27.7 (81)Not measured 1 (3)Above recommended level 83.1 (167)At or below recommended level

16.9 (34)

Attended a structured diabetes education course

39.7 (116)

Nb= Where missing data was present, valid percentages were used. *MDI= Multiple Daily Injection,

a = Mean years (SD)

29

Only two fifths of participants indicated that they had attended a structured

diabetes education course, despite this being highlighted as a key priority for

implementation in recent UK guidance (National Institute for Health and Care

Excellence, 2015b). Despite two thirds of participants indicating that they lived with

their parents, three quarters said they managed their diabetes independently. Of those

that stated they knew their HbA1c level and provided it, 83% were above the

recommended level of 48 mmol/mol.

Variable distribution and reliability

Table 3:

Descriptive statistics, distribution and reliability of variables

Measure (N) Total Mean (SD)

Item Mean* (SD)

Cronbach’s alpha

Skew z Kurtosis z

DASS (292) 6.85 (6) .98 (.85) .94 5.43 -1.47SCI-R (292) n/a 3.50 (.6) .82 -3.308 -.151ESS total (281) 41.3 (23) 1.40 (.76) .97 1.593 -3.22ESS – Chara (287) 14.5 (10) 1.20 (.87) .95 3.35 -3.22ESS – Behav (282) 12.3 (7) 1.37 (.81) .93 1.97 -3.08ESS – Body (281)ESS – Diab (281)

7.01 (3)7.62 (5)

1.97 (1)1.27 (.94)

.93

.90-3.742.07

-3.58-3.80

Hba1c (201) 63.72 (19.8)

n/a n/a 9.87 13.62

HbA1c extreme outliers excluded (198)

62.47 (17.1)

n/a n/a 6.60 7.38

*ESS scale: from 0 to 3 with 3 indicating high shame. SCIR scale: from 1 to 5 with 5 indicating good self-care. DASS: from 0 to 3 with 3 indicating low mood.

DDASS

Individual scores on the DDASS spanned the full range; from 0 to 21. The

score distribution showed some positive skew which reflects a substantial group who

reported no symptoms of depressive affect. Alongside the mean, this suggests that

overall depression levels in the sample were low, with a minority reporting maximum

30

scores. As such, kurtosis was negative and indicated a flatter distribution with scores

extending to either end of the scale. When also considering a visual inspection of the

histogram (Appendix M), the distribution does appear somewhat non-normal but not

excessively so. Cronbach’s alpha indicated good reliability. ‘Alpha if item deleted

analysis’ and ‘item-total correlation analysis’ supported the inclusion of all items in

the scale.

ESS

Given the ESS is rated 1 to 5, the average shame level was low in this sample.

A comparison of subscale item means indicated that body shame was the highest in

the sample and character the lowest. Histograms revealed approximately normal

distribution for the ESS total. Body shame subscale scores were slightly skewed

towards higher shame whilst character, diabetes and behavioural shame subscale

scores were slightly skewed towards lower shame. Kurtosis was negative for all

subscales, indicating flatter distributions (Appendix M). However when considered in

conjunction with skewness and kurtosis z scores, the distribution of all ESS subscales

were not considered to be substantially non-normal.

Given that the diabetes shame scale was developed specifically for the current

study a maximum likelihood factor analysis with direct oblimin rotation was

performed on these items to investigate if there may be a 2-factor solution

(consultation-related shame and diabetes self-care related shame.) However, this was

not supported due to the emergence of only one factor with an eigenvalue over one

and a significant chi-square goodness of fit test for the 2-factor model. This suggested

a poor fit. In addition one item loaded on both factors. The diabetes self-care shame

subscale was, therefore, analysed as a single subscale. Cronbach’s alpha was high for

31

this subscale (.9) suggesting very good internal reliability. It also correlated highly

with the ESS total (r=.782, p<.001).

The ESS total scale demonstrated excellent internal reliability in this sample.

Internal reliability was also high for all subscales. ‘Alpha if item deleted’ analysis

indicated that the inclusion of one question (“Have you avoided looking at yourself in

the mirror”) lowered the body shame subscale alpha (from .93 to .91). However, as

this value of alpha was still very high and because the item had a strong correlation

with the total (.65) it was included.

SCIR

The distribution of self-care scores was slightly skewed towards the higher

end of the scale indicating better diabetes self-care. Kurtosis was low and, taken in

conjunction with the histogram, the distribution of scores was considered to be

approximately normal (Appendix M). Cronbach’s alpha indicated good internal

reliability of scores in this sample.

HbA1c

Self-reported HbA1c values were reported for two thirds of the sample.

HbA1c’s were given in both % and mmol/mol units and converted into mmol/mol for

ease of comparison. Participants were asked to indicate whether values were given in

% or mmol/mol, but answers were often contradictory. For this reason, scores above

20 were rated as mmol/mol and below 20 as % converted to mmol/mol (Diabetes

Digital Media ltd, 2016). Skew and Kurtosis z scores, along with a visual inspection

of the histogram (Appendix M) revealed a positive skew for HbA1c scores, with a

slightly long tail of values at the higher end of the scale.

32

A boxplot revealed 8 statistical outliers and 3 extreme outliers at the higher

end of the scale (Appendix O). No published maximum possible HbA1c values could

be found to warrant the removal of these statistical outliers. However based on range

information given on two well-known patient information websites (Diabetes Digital

Media ltd, 2016; Diabetes UK, 2016b) it was deduced that the 3 extreme outliers were

unlikely to be true HbA1c values. Removal of these 3 reduced the skew and kurtosis

to an approximately normal level, especially when considering the shape of the

histogram (Appendix M). As such, Pearson’s correlation was deemed appropriate to

use. As these values could not be ruled out completely as extremely high scores, all

subsequent analyses involving HbA1c values were conducted on the full sample, in

addition to the sample minus the three extreme outlying values (HbA1c-EO). Both

sets of results are presented.

Hypothesis 1 – Shame-proneness and self-care

Scatterplots revealed that there were no substantial violations of the

assumptions of linearity and homoscedasticity for each ESS subscale and self-care

outcome pairing (Appendix N). Skew and kurtosis values along with visual

inspection of the histograms (Appendix M) indicated approximately normal

distribution for the SCIR. There was some slight skew for some of the shame-

proneness subscales, and some remaining skew for HbA1c-EO. However, given the

large sample size and the robustness of Pearson’s correlation to moderate non-

normality (Bishara & Hittner, 2012; Field, 2000) the Pearson product-moment

correlation was selected.

33

Table 4

Pearson’s correlations between shame-proneness and diabetes self-care measures

ESS Total ESS Character

ESS Body ESS Behaviour

ESS Diabetes

SCI-RN 281 287 281 292 281Pearson’s r -.327 -.275 -.270 -.170 -.470Size of correlation

moderate small small small moderate

p-Value* p<.001 p<.001 p<.001 p=.002 p<.001

HbA1cN 194 198 194 195 194Pearson’s r .294 .229 .260 .173 .376Size of correlation

small small small small moderate

p-Value* p<.001 p=.001 p<.001 p=.008 p<.001

HbA1c (mmol/mol) with extreme outliers removedN 191 195 191 192 191Pearson’s r .280 .193 .253 .177 .385Size of correlation

small small small small moderate

p-Value* p<.001 p=.003 p<.001 p=.007 p<.001*One-tailed

All shame-proneness subscales were significantly negatively correlated with

diabetes self-care, with coefficients above a .15 level. They were also all significantly

positively correlated with HbA1c (higher HbA1c generally indicates poorer diabetes

self-care). Diabetes-related shame showed the largest coefficient across all three

indicators of self-care, and behavioural shame showed the smallest. This suggests that

as shame-proneness increased, particularly diabetes shame, diabetes self-care

decreased. This provides support for hypothesis 1 that high shame-proneness is

associated with poorer diabetes self-care. This also suggests that shame associated

specifically with diabetes self-care and interactions with healthcare professionals has

a stronger relationship with self-care behaviours than more general shame

experiences.

34

Hypothesis 2 – Depression as a mediating factor between shame and self-care

Shame and depression

Table 5

Pearson’s correlations between depression and shame

DDASS ESS Total ESS Character

ESS Body ESS Behaviour

ESS Diabetes

n 281 287 281 282 281

Pearson’s r

.624 .615 .418 .520 .513

Size of correlation

large large medium large large

p-value p<.001 p<.001 p<.001 p<.001 p<.001

Scatterplots revealed that no substantial violations of linearity and

homoscedasticity occurred (Appendix N). The DDASS scores were positively

skewed, but as they were paired with approximately normally distributed shame

scores, in the context of a large sample, the parametric Pearson’s correlation was

used. All shame subscale scores were positively correlated with depression scores

with a large effect size, with the exception of body shame which showed a medium

effect.

Depression and Self-care

Pearson’s correlation was used to assess the relationship between depressive

affect (DDASS) and the self-care variables (SCIR, HbA1c, HbA1c-EO). There was a

significant, moderate, negative correlation both between depression scores and SCI-R

(r=-.34, p<.001). This indicates that higher depressive affect was associated with

lower levels of self-reported self-care activities. There was also a significant,

moderate positive correlation between depression scores and self-reported HbA1c

(outliers included, r=.371, p<0.001, outliers excluded, r=.317, p<0.001).

35

Mediation analyses

To further assess normality for the purpose of mediation, histograms were

generated for the standardised residuals for each pairing of variables included in the

models (Appendix N). These indicated approximately normal distribution for all

pairings, with the exception of HbA1c. However, as before, removal of the three

statistical outliers resulted in the distribution becoming approximately normal. Models

including both HbA1c and HbA1c-EO are included.

Separate mediation analyses were computed using ESS subscales as predictor

variables. Total ESS score was not used as a predictor as the subscales held enough

reliability to stand alone and provided more useful information as such. In each

mediation analysis, depression score was the mediator. This analysis was repeated

using the SCIR, HbA1c and or HbA1c-EO as dependent measures of self-care.

36

Table 6 Mediation analysis

Predictor Mediator Outcome IV on M M on DV Direct Effect Indirect Effect Total Effect

(IV) (M) (DV) (a path) (b path) (c’ path) (a x b) 95% CI (c path)Diabetes Shame Depression Self-care .54*** -.01 (p=.038) -.04*** -.007 (-.015, .000) -.049***

HbA1c .55*** .83 (p=.002) .90 (p=.001) .459 (.084, .962) 1.357***

HbA1c-EO .54*** .49 (p=.038) .93*** .260 (-.020, .649) 1.193***

Body Shame Depression Self-care .64*** -.03*** -.02 (p=.01) -.017 (-.028, -.009) -.041***

HbA1c .64*** 1.09*** .63 (p=.097) .703 (.277, 1.309) 1.332***

HbA1c-EO .62*** .77*** .63 (p=.059) .478 (.147, .926) 1.108***

Behav Shame Depression Self-care† .42*** -.034*** .0004, (p=.95) -.01 (-.021, -.008) -.014 (p=.004)

HbA1c† .40*** 1.3*** -.043 (p=.84) .525 (.222, .888) .482 (p=.016)

HbA1c-EO .40*** .92*** .054 (p=.78) .366 (.156, .655) .419 (p=.014)

CharacShame

Depression Self-care .35*** -.027*** -.006 (p=.13) -.009 (-.015, -.005) -.016***

HbA1c† .35*** 1.27*** -.007 (p=.97) .446 (.180, .737) .439 (p=.001)

HbA1c –EO .34 *** .960*** -.004 (p=.98) .324 (.124, .572) .32 (p=.007)

***p<.001; 95%, CI in bold suggest evidence that the indirect effect is different from zero, †program flagged that bias corrected confidence intervals were untrustworthy so percentiles were used (Hayes, 2013)

37

38SELF-CARE IN TYPE 1 DIABETES

The conditions that need to be met to demonstrate mediation are:

1. Shame-proneness significantly predicts depression (path a)

2. Depression significantly predicts self-care (path b)

3. Shame significantly predicts self-care before depression is entered (path c)

4. The indirect effect of depression must be significantly different from zero. This is

assessed by examining whether the 95% CI encompasses zero.

Table 6 indicates that the first three conditions for mediation were met in all

models. Inspection of the 95% Cis indicates evidence that the indirect effect of

depression is significantly different from zero in all but two models (diabetes shame

on SCI-R scores and HbA1c without extreme outliers). In all other models,

comparison of c and c’ indicates the mediation effects were partial. There is evidence

of stronger mediation effects in the models of behavioural and characterological

shame on SCI-R/HbA1c (both with and without extreme outliers) through depression.

For the models assessing diabetes-related and body shame on self-care outcomes,

comparison of c and c’ reveals the direct effect of shame remains either significant, or

marginally significant.

Additional Findings

Independent sample t-tests were conducted to ascertain whether there were

any differences between those who knew or did not know their HbA1c levels.

Levene’s test for equality of variances was non-significant for all tests, indicating

equality of variance could be assumed, unless otherwise indicated.


Table 7

t-tests to determine difference on measures based on knowledge of HbA1c

Mean (SD) t(df) Sig (2-tailed)

Measure Known Not KnownDepression 6.2(5.7) 8.4(6.3) -2.8(287) p=.006Diabetes shame 6.8 (5.4) 9.7(5.7) -3.9(276) p=<0.001Character shame

13.6(10.2) 16.9 (10.9) -2.4(282) P=.017

Behaviour shame*

11.9(7) 13.6(8) -1.6(123) P=.107

Body shame 6.6(3.9) 8(3.8) -2.7(276) P=.006Self-care (SCIR)

3.6 (0.58) 3.3 (0.59) 3.7(287) p=<0.001

*Equal variance’s not assumed

These tests indicated that those who did not know their HbA1c level had

significantly higher levels of depression compared to those who did not. They also

had significantly higher shame scores in all areas except for behavioural shame and

significantly lower SCIR scores. This suggests that people who have high depressive

affect and shame and low self-care are less likely to be aware of their HbA1c level.

Discussion

Summary of main findings

Hypothesis 1 was supported: each of the subscales of shame-proneness

showed a significant correlation of high shame-proneness with poorer self-care.

Diabetes shame-proneness showed the strongest correlation (moderate-large) out of

each of the shame subscales.

The findings confirm that shame is a relevant area of research for emerging

adults with T1D, both in relation to wellbeing and their ability to engage in vital self-


care. The findings also suggest that different types of shame may predict self-care via

differing pathways.

There was a significant association between both depression and poorer self-

care and shame and depression, supporting the direction of existing research findings

(Cheung et al., 2004; Gonzalez et al., 2008)

However Hypothesis 2 was only partially supported. All four types of shame

evidenced some partial mediation by depression, though this was only marginal for

diabetes shame. There was evidence of stronger mediation by depression in the

models of behavioural and character shame. For the models assessing diabetes-related

and body shame on self-care outcomes, the direct effect of shame generally remained

significant.

Discussion of main findings

There was evidence that diabetes shame and body shame directly predicted

extent of engagement in self-care. One explanation of this link could be the role of

concealment. Concealment is a key aspect of shame, raised by multiple shame

theorists (Andrews et al., 2002; Gilbert, 2011) and supported by research (Tangney,

1993; Tangney et al., 1996). As such, it was directly captured as part of all shame

subscales. Shame is inherently rooted in the fear of the self being held in the mind of

others with denigration (Gilbert, 2011). Concealment, therefore is the behavioural

response to this fear, and an attempt to avoid it becoming a reality. This fear of

disapproval may be directed at those invested in the individual improving their self-

care, such as parents and healthcare professionals. They may also be peers whom the

individual fears may ridicule or bully them for the overt self-care behaviours that

mark them out as different. This may result in avoidance of self-care activities where


there is a social risk of disapproval; whether that disapproval relates to engaging or

not engaging in self-care in the ideal way.

Body shame has also been associated with behaviours that would directly

counter self-care. Research has shown that body shame is more predictive of

disordered eating than global shame (Burney & Irwin, 2000). The direct link between

body shame and lowered self-care could be explained by weight control behaviours

directly impacting on self-care. This includes skipping meals and the dangerous

practice of restricting insulin in an effort to lose weight. Research suggests that over a

third of female 11-25 year olds with T1D have experimented with insulin omission

for weight loss (Peveler et al., 2005).

High body shame is also at odds with self-care, which involves active

engagement in caring for the body. The urge may be to avoid this, if engaging with a

shameful body has become too painful, or individuals lack the motivation to care for a

body which they see as unacceptable.

It follows that an urge to conceal, whether that be the body or the self-care

aspects of diabetes, would leave people less able to ask for help with aspects of self-

care they are struggling with. Thus without appropriate support; both practical and

emotional, self-care may continue to decline.

This is supported by Terry and Leary’s (2011) proposal that low self-

compassion (and thus high shame) likely prevents people from seeking medical

attention. They explain this through Neff and Dahm’s (2014) concept of common

humanity; those who see their distressing experiences as unique to themselves, as

opposed to routine problems shared by many people, are less able to be self-

compassionate (and by implication high in shame) as they expect others to view them

negatively. This could be extended to displaying self-care amongst peers. Those high


in self-compassion may be more accepting of their diabetes as just one aspect of

themselves, and although they may not know others with diabetes, could hold on to

the notion that everyone suffers to some extent and has some understanding and

acceptance of difference. Similarly, those with high self-compassion may be more

accepting of having an imperfect body, and thus more able to engage in self-care.

Character and behavioural shame both showed a much stronger mediation by

depression. Shame and concealment related to general behaviour and personality are

unlikely to influence diabetes self-care directly. Instead, this type of shame may point

more towards isolation and depressive rumination about the self. It may be that for

some people with T1D, as in the general population, there is a vulnerability to shame

related depression, perhaps fuelled by shame-related early maladaptive schema’s

(Young et al., 2003). The additional aspects of depression, such as hopelessness and

self-efficacy may then lead to the resultant deleterious effect on self-care. For people

with T1D who experience more general shame related depression, additional support

is still needed. However this may focus on reducing symptoms of depression, and

tackling any existing shame may be one route to doing this.

Secondary findings

Despite NICE guidance stating HbA1c as the gold standard measurement for

glycaemic control over time (National Institute for Health and Care Excellence,

2015b), it was noteworthy that only two thirds of participants were able to state theirs.

In addition to this, there were some levels that fell outside of usually reported ranges

(Diabetes Digital Media ltd, 2016; Diabetes UK, 2016b) suggesting possible errors.

When asked to state if the value they had given was measured in mmol/mol or %

many participants gave answers that were not compatible. This suggests that either


HbA1c levels are not widely understood amongst this age group, or many individuals

are not motivated to remember it.

Interestingly, those who did not know their HbA1c levels had significantly

higher levels of depression and shame, and lower levels of self-care. This could be for

a number of reasons. One interpretation is that those with higher levels of emotional

problems (such as depression and shame) are less likely to remember HbA1c, in the

context of multiple possible stressors in their lives. Another interpretation is that the

concealment and avoidant aspect of shame may lead people to engage less with

tangible markers of poor glycaemic control. This finding does suggest that knowledge

of HbA1c and ability to engage with it may be intertwined with emotional factors, as

are other aspects of self-care.

Additionally, only 40% of participants indicated that they had attended a

structured diabetes education programme. This is at odds with UK guidance, which

advises all people with T1D are encouraged to attend such a programme to enable

them to improve their self-care (National Institute for Health and Care Excellence,

2015b). This is concerning, given that T1D is a long-term condition that requires a

high level of patient autonomy and engagement to maintain health. The sample was

also predominantly from the UK. A lack of knowledge of HbA1c may prevent people

with T1D from being able to take a longer-term view of their diabetes (i.e. over the

course of a few months) to effectively self-monitor over time. Not attending a

structured course also removes a normalising opportunity to see others struggling with

similar aspects of self-care.


Strengths, Limitations and Future Directions

A key strength of this study was the large number of participants recruited.

Given the constructs under investigation, sufficient numbers of participants was

essential to capture a range of experience and the possible associations between these.

This was made possible by advertising through diabetes related social media groups

popular with this age group. The large sample size indicates that this was an issue of

concern to people with T1D and the completion rate of the study was high, indicating

acceptability of the survey and a resonance with individual experience.

One limitation born out of the recruitment strategy was the lack of

demographic variability of the sample, which was predominantly white, female and

British. It may be that shame is experienced differently in differing cultures, or

amongst men. Previous research suggests that gender differences in investment in

social relationships may result in women experiencing higher levels of shame than

men (Gross & Hanson, 2000). Further research could explore this potential difference

in a sample with T1D and ascertain whether and how this may impact on self-care.

The main limitation of the current study was that self-care indices were given

by retrospective self-report only. For HbA1c levels this meant that the numbers for

inclusion in analyses were lower than those in the SCI-R analyses. As discussed

earlier, there were notable differences between those who reported and those who did

not report their HbA1c level, which may have affected the result obtained. It was also

not clear whether HbA1c values which fell at the extreme end of the scale were valid

or represented mistakes. However, by removing the statistically extreme outliers, the

relationship between diabetes-related shame and HbA1c more closely resembled the

relationship with the SCIR, lending support to these being valid indicators.

Notwithstanding this limitation, the findings relating to self-care measures (e.g.


correlations with shame and depression) were largely consistent, suggesting some

internal consistency in the sample in their ratings of self-care.

It is important to note that the results of the present study are correlational in

nature, and thus causation cannot be assumed. An alternative explanation of the

findings is that people feel diabetes-related shame in particular because they know

they are not meeting standards of self-care. However, even if this is the case, it is

important to acknowledge, as shame is a powerful and distressing emotion.

The current study does, however, provide evidence that shame and self-care

are linked, and suggests that some types of shame may be mediated by depression.

Further research should assess the potentially circular relationship between self-care

and shame. For example, for someone who is high in shame-proneness, navigating

initial life adjustments following diagnosis may be particularly difficult as they fail to

control their blood glucose levels. This may then begin to result in avoidance of self-

care (which has begun to evoke experience of shame), which in turn leads to further

experience of shame in healthcare appointments.

Longitudinal research could address the question of how self-care behaviour

and shame-proneness change over time. This would also allow for modelling of

factors which may trigger or maintain experiences of shame, such as differing

experiences with peers, healthcare professionals and family.

Clinical Implications

For an emerging adult with a vulnerability to experiencing shame, they may be

caught in a double bind of being ashamed to adhere to self-care around some

members of their peer-group, but also feeling shame at not having improved their

glycaemic control at healthcare appointments.


Self-compassion is often discussed as the adaptive opposite of shame (Gilbert

& Procter, 2006b) because it involves a focus on understanding that failure and

suffering are universal (Neff & Dahm, 2014). Cultivating self-compassion is therefore

a potential avenue for reducing shame. A self-compassionate narrative within a

diabetes healthcare appointment would be one that focussed on individualised self-

care targets rather than continually aiming for below the recommended 48mmol,

which some may never achieve. Wolpert and Anderson (2001) highlight the increased

risk of perpetuating perfectionism within the clinician-patient relationship in the case

of T1D, particularly when guidelines for HbA1c levels are not personalised and may

be very challenging to reach. Individualised targets would weigh up the medical costs

and benefits alongside the psychosocial, ensuring that the goal is always quality of

life.

Archer (2014) highlights the inter-relational way that shame can play out

within the relationship between the Clinician and person with T1D and how shame

may well also arise for Clinicians who feel de-skilled in the face of a complex

presentation. He suggests that Clinicians reflect on their own experiences of shame

and consider sharing an example with their patients. Whilst many Clinicians may feel

uncomfortable doing this directly, conversations could at least openly acknowledge

the widespread difficulty that young people in particular face in maintaining their self-

care routines, in order to reinforce the concept of common humanity.

Compassion could also be usefully cultivated within peer groups. Emerging

adults are increasingly turning to social media platforms for T1D peer support

(Greene, Choudhry, Kilabuk, & Shrank, 2011). Encouraging the use of these

platforms, and other face-to-face peer support when possible, could be an effective


way of enhancing self-compassion amongst emerging adults with T1D through a

focus on the sharing of common difficult experiences and mutual understanding.

Conclusion

This study provides preliminary support for a model whereby diabetes and

body shame directly affect T1D self-care in emerging adults. Conversely, character

and behavioural shame showed evidence of almost complete mediation by depression.

Further research is needed to explore experiences of diabetes and body shame over

time alongside factors which may play a role in triggering and maintaining the

experience of shame. Cultivating a self-compassionate narrative in healthcare

consultations may be one potential avenue for further research to counteract

experiences of shame amongst this population.


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List of Appendices

Appendix A Example advertisement used online and in poster form–

wording was changed slightly across different mediums

depending on audience and character limit.

Appendix BEthics approval letter

Appendix C Information screenAppendix D Consent screenAppendix E Normalising statementAppendix F Demographic and diabetes

specific questions

Appendix G Additional diabetes specific questions

Appendix H Debrief screenAppendix I ESSAppendix J ESS Diabetes shame scale

Appendix K SCI-RAppendix L DDASSAppendix M HistogramsAppendix N ScatterplotsAppendix O Box-plotsAppendix P Histograms for residuals

Appendix Q Health Psychology Instructions for Authors


Appendix A- Advertisement Poster

Do you have type 1

diabetes?Self-care for people with type 1 diabetes, such as taking medication and adjusting diet, is essential to staying healthy. However many people struggle to keep up with this complex routine.

We’re looking for people between the ages of 16 and 25 with a diagnosis of type 1

diabetes to take part in a 15 minute online questionnaire, looking at aspects of self-care and

emotional wellbeing. This research could lead to new guidelines or psychological interventions for people

struggling with self-care, helping them to manage their diabetes and health long term.

To take part please scan the code below or visit :


http://surveys.fahs.surrey.ac.uk/Self_Care_in_Diabetes/

Thanks for your time.

Study end date: October 2015

Appendix B – Statement of ethical approval


Appendix C- Participant Information Screen

Self-care and emotions in young people with type 1 diabetes

Information ScreenIntroductionI am a Trainee Clinical Psychologist and as part of my Doctorate I am conducting a research study investigating self-care in diabetes. Before you decide whether you would like to participate, you need to understand why the research is being done and what it will involve for you. Please take the time to read the following information carefully and talk to others about the study if you wish.

What is the purpose of the study?Self-care through taking the right medication at the right time, as well as making lifestyle adjustments is vital for people with type 1 diabetes. However, many struggle with their self-care and it is important to find out more about this in order to know how best to support people to stay healthy. This research aims to look at the role of emotions in self-care.

Who can take part?To take part you should be between the ages of 16-25, able to read and understand English and have a diagnosis of type 1 diabetes.

Do I have to take part?No, you do not have to participate. You can also choose to withdraw at any time without giving a reason.

What will my involvement require? You will be asked to complete a short online questionnaire. This asks questions about your emotions along with a few demographic questions about yourself (e.g. age, gender). We also ask for your most recent Hba1c level reading (though you can still take part if you don’t know it), along with a series of questions about


medication routine and lifestyle. Participation will take around 15 minutes.

What will I have to do?If you would like to take part, please read the consent statements on the next page. If you agree with these, please indicate this by clicking “Yes” and the questionnaire will appear on the next page. If you would like more time to decide whether you want to participate, you can come back to this page when you feel ready.

What are the possible disadvantages or risks of taking part?As the research is looking at emotions, some questions require you to “look inwards” and think about your own mood and state of mind. It is possible that some people may find this upsetting. You are encouraged to only take part if you are happy to think about, and answer questions about your emotions. If after filling out the questionnaire you do have concerns about your emotional wellbeing, or diabetes self-care we would see this as an opportunity for you to seek support, by speaking to your regular healthcare specialist. Advice on how to find additional services that can offer support are included on the debrief screen, which will appear after you have completed the questionnaire. At the end of each section of questions you will be asked if you would like to continue; by clicking “No – withdraw from the study now” you can choose to withdraw from the study and skip straight to the debrief screen.

What are the possible benefits of taking part? It is unlikely that you will benefit directly but your participation may give us vital information that contributes towards helping others with their self-care.

What happens when the research study stops?No further participation is required after the online questionnaire. The questionnaire is for research purposes only, and as such you will not be able to access your individual scores. However, interested participants can opt to be emailed a summary of the study, highlighting its findings, once it is complete. Email addresses will not be linked with individual questionnaire answers and will be destroyed once we have sent out summaries.

What if there is a problem?Any complaint or concern about any aspect of the way you have been dealt with during the course of the study will be addressed; please contact the research supervisor: Dr Laura Simonds:[email protected].

Will my taking part in the study be kept confidential?Yes. All of the information you give will be rganizing so that those


reading reports from the research will not know who has contributed to it.All participants will be assigned a number in place of their name to ensure confidentiality. All research data will be stored securely in a database and then destroyed after 10 years. Data collection and retention will be in accordance with the Data Protection Act (1998).

Contact details of researcher and supervisor:Principal Researcher: Alice TurlandEmail: [email protected] Supervisor: Dr Laura SimondsEmail [email protected]: School of PsychologyUniversity of SurreyStag Hill CampusGuildford, GU2 7XHPhone number: 01483 686936

Who is rganizing and funding the research?This research is being completed as part of the PsychD training in Clinical Psychology at the University of Surrey. It will form part of the researcher’s portfolio, and efforts will also be made to publish in an academic journal, and through the charity Diabetes UK.

Who has reviewed the project?The study has been reviewed and received a Favourable Ethical Opinion (FEO) from the University of Surrey Faculty of Arts and Human Sciences Ethics Committee.

Thank you for taking the time to read this Information Screen.

PLEASE CLICK HERE TO START THE SURVEY


Appendix D

Consent Screen

I voluntarily agree to take part in the study on Self-care and emotions in young people with Type 1 Diabetes

I have read and understood the Information Screen. I have been given a full explanation by the investigators of the nature, purpose, location and likely duration of the study, and of what I will be expected to do. I have been advised about any discomfort and possible ill-effects on my health and well-being which may result.

I consent to my personal data, as outlined in the accompanying information sheet, being used for this study and other research. I understand that all personal data relating to volunteers is held and processed in the strictest confidence, and in accordance with the Data Protection Act (1998).

I understand that I am free to withdraw from the study at any time without needing to justify my decision and without prejudice.

I confirm that I have read and understood the above and freely consent to participating in this study. I have been given adequate time to consider my participation and agree to comply with the instructions and restrictions of the study.

By clicking the “YES” button you consent to the above statements.

Appendix E – Opening normalising statement, (Stenner et al, In preparation)


“Some people tell us that managing their diabetes can be challenging. We would like to know about the things you are doing to look after your diabetes, and

about your emotional wellbeing. If we understand how people manage, we can offer better care and support. We realise that you may not be doing what you have been advised to do all of the time. This is not a test. Please be as honest as you

can when you are filling this in. Your responses will be confidential. “

Appendix F – Demographic and diabetes specific questions


What is your gender?

Male

Female

Transgender

Other

Please indicate your occupational status

Employed full time

Employed part time

Self-employed

Occasional/ casual work

Student

Other

What is your ethnic group?

Choose one option that best describes your ethnic group or background

White

1. English/Welsh/Scottish/Northern Irish/British

2. Irish

3. Gypsy or Irish Traveller

4. Any other White background, please describe

Mixed/Multiple ethnic groups

5. White and Black Caribbean

6. White and Black African

7. White and Asian

8. Any other Mixed/Multiple ethnic background, please describe

Asian/Asian British

9. Indian

10. Pakistani


11. Bangladeshi

12. Chinese

13. Any other Asian background, please describe

Black/ African/Caribbean/Black British

14. African

15. Caribbean

16. Any other Black/African/Caribbean background, please describe

Other ethnic group

17. Arab

18. Any other ethnic group, please describe

ONS ethnicity question, retrieved from: http://ons.gov.uk/ons/guide-method/measuring-equality/equality/ethnic-nat-identity-religion/ethnic-group/index.html

Do you currently live with parents / carers?

Yes

No

Do you currently live in the United Kingdom?

Yes

No

(If no) Please state country of residence

Approximately at what age were you diagnosed with type 1 diabetes?

Do your parents / carers attend Diabetes related healthcare appointments with you?

Always

Often


Occasionally

Never

Please indicate the extent to which you manage your diabetes independently

I manage my diabetes independently 1 2 3 4 5 6 7My parent / carer manages my diabetes

How easy do you find it to return to your diabetic regimen following a lapse?

Very easy Easy Difficult Very Difficult

Do you currently have a diagnosed mental health problem(s)?

Yes

No

Please state current diagnosed mental health problem(s)

Have you previously been diagnosed with a mental health problem(s)?

Yes

No

Please state previously diagnosed mental health problem(s)


Appendix G – Additional diabetes specific questions, (Stenner et al, In preparation)

How do you manage your diabetes?

Multiple Daily Injections (MDI) – injecting with every meal and using long-acting insulin once or twice a day.

Insulin Pump

Other

Have you attended any diabetes structured education courses?

Yes

No

(If yes) In which year did you attend the course?

Appendix H


Debrief Screen

You have now reached the end of the study. Thank you for taking the time to participate. The questionnaire was specifically looking at low mood,

experience of shame and how much self-care young people engage in. Everyone experiences shame so it is not unusual. However, some people

experience it more than others. People can feel shame when they think they are not what they would like to be or if they think other people disapprove of

them. For young people, this is often about seeing yourself as different to your friends. We are interested in knowing whether young people with diabetes feel shame and if this relates to low mood. We also want to know if shame and low

mood relate to how much young people with diabetes engage in self-care activities. If it looks like this is the case, it could lead to offering talking

therapies focusing specifically on addressing shame and low mood, for those that struggle with diabetes self-care.

As stated in the information screen, we are unable to provide you with your

questionnaire scores as they are designed for research purposes only. However if, after completing the questionnaires, you have any

concerns about your diabetes self-care, mood, or shame please seek advice from your regular healthcare practitioner. Below are links to

further resources for people who have concerns about their emotional or diabetic wellbeing.

Lastly, If you know anyone else between the ages of 16 and 25, who has type 1 diabetes, we would be very grateful if you could pass on the details of this study to them.

Details of where to get help to if you are concerned about your mental health

or diabetes self-care

More information www.depressionalliance.org – This website contains useful information for anyone who thinks they may be depressed. You can learn about the symptoms, find self-help advice, and access an online support forum. Diabetes UK - http://www.diabetes.org.uk/About_us/ - Diabetes UK provide information, help and peer support to help people with diabetes manage their condition effectively.

Access to professional support


If you think you may be depressed, or suffering with any other mental health problems, and would like to explore treatment options, please visit your local GP. Psychological therapy and counselling is usually available on the NHS, but this will vary depending on where you live. These approaches can be incredibly helpful in allowing you some space to explore the problems in your life, and learn techniques to begin to feel like your old self again. Your GP will be able to let you know what’s available in your area, or discuss medication options with you.

It is common to find diabetes self-care a challenge. If you are concerned about any aspects of your diabetes self-care, please contact your GP or diabetes healthcare professional to discuss how they can support you. Helplines Samaritans –24-hour support line. Talk to a trained supporter in complete confidence about whatever is troubling you.08457 90 90 90 MIND – A mental health charity that can provide information and advice about accessing support. Lines are open 9am to 6pm, Monday to Friday (except for bank holidays).0300 123 3393 Access to urgent support If you’ve reached crisis point and are worried that you may harm yourself, please call 999 or visit your local Accident and Emergency. There you will be able to talk to an experienced professional who can make a safety plan with you, and put you in touch with the right support services.

Appendix I: Experience of Shame Scale (ESS) (Andrews et al., 2002)


Everybody at times can feel embarrassed, self-conscious or ashamed. These questions are about such feelings if they have occurred at any time in the past year. There are

no 'right or 'wrong answers. Please select the response which applies to you.

Not at all

1

A little

2

Moderately

3

Very Much

4

1. Have you felt ashamed of any of your personal habits?

2. Have you worried about what other people think of any of your personal habits?

3. Have you tried to cover up or conceal any of your personal habits?

4. Have you felt ashamed of your manner with others?

5. Have you worried about what other people think of your manner with others?

6. Have you avoided people because of your manner?

7. Have you felt ashamed of the sort of person you are?

8. Have you worried about what other people think of the sort of person you are?

9. Have you tried to conceal from others the sort of person you are?

10.Have you felt ashamed of your ability to do things?

11.Have you worried about what other people think of your ability to do things?

12.Have you avoided people because of your inability to do things?

13.Do you feel ashamed when you do something wrong?


14.Have you worried about what other people think of you when you do something wrong?

15.Have you tried to cover up or conceal things you felt ashamed of having done?

16.Have you felt ashamed when you said something stupid?17.Have you worried about what other people think of you when you said something stupid?

18.Have you avoided contact with anyone who knew you said something stupid?

19.Have you felt ashamed when you failed in a competitive situation?

20.Have you worried about what other people think of you when you failed in a competitive situation?

21.Have you avoided people who have seen you fail?

22.Have you felt ashamed of your body or any part of it?

23.Have you worried about what other people think of your appearance?

24.Have you avoided looking at yourself in the mirror?

25.Have you wanted to hide or conceal your body or any part of it?


Appendix J: ESS Diabetes shame subscale (created for purposes of current study)

U Not at all

1

A little

2

Moderately

3

Very Much

4

26. Have you felt ashamed of your diabetes

self-care activities (e.g. insulin, medication,

diet and lifestyle changes)?

27. Have you worried about what other people

think about your diabetes self-care activities?

28. Have you avoided diabetes self-care activities

because of a worry about what others think?

29. Have you felt ashamed when Healthcare

professionals have spoken to you about diabetes

self-care activities?

30. Have you worried about what Healthcare

professionals think about your diabetes self-care?

31. Have you concealed aspects of your

diabetes self-care from your Healthcare

professionals?


Appendix K - Self Care Inventory-Revised Version (SCI-R) (Weinger et al., 2005)

This survey measures what you actually do, not what you are advised to do. Howhave you followed your diabetes treatment plan in the past 1-2 months?

Never: 1 Rarely: 2 Sometimes: 3 Usually: 4 Always: 5

1 2 3 4 5

1. Check blood glucose with ( ) ( ) ( ) ( ) ( ) monitor

2. Record blood glucose results ( ) ( ) ( ) ( ) ( )

3. If type 1: Check ketones when ( ) ( ) ( ) ( ) ( )glucose level is high or Have type 2 diabetes ( )

4. Take the correct dose of ( ) ( ) ( ) ( ) ( )diabetes pills or insulin or Not taking diabetes pills or insulin ( )

5. Take diabetes pills or insulin at ( ) ( ) ( ) ( ) ( )the right time orNot taking diabetes pills or insulin ( )

6. Eat the correct food portions ( ) ( ) ( ) ( ) ( )

7. Eat meals/snacks on time ( ) ( ) ( ) ( ) ( )

8. Keep food records ( ) ( ) ( ) ( ) ( )

9. Read food labels ( ) ( ) ( ) ( ) ( )

10. Treat low blood glucose with ( ) ( ) ( ) ( ) ( )just the recommended amountof carbohydrate

Never had low blood glucose ( )


1 2 3 4 511. Carry quick acting sugar to treat low blood glucose ( ) ( ) ( ) ( ) ( )

12. Come in for clinic ( ) ( ) ( ) ( ) ( )appointments

13. Wear a Medic Alert ID ( ) ( ) ( ) ( ) ( )

14. Exercise ( ) ( ) ( ) ( ) ( )

15. If on insulin: Adjust insulin ( ) ( ) ( ) ( ) ( )dosage based on glucosevalues, food, and exercise

Not onInsulin ( )


Appendix L

DDASS 7 – Depression subscale

Please read each statement and circle a number 0, 1, 2 or 3 which indicates how much the statement applied to you over the past week. There are no right or wrong answers. Do not spend too much time on any statement.

The rating scale is as follows:

0 Did not apply to me at all

1 Applied to me to some degree, or some of the time

2 Applied to me to a considerable degree or a good part of time

3 Applied to me very much or most of the time

1. I couldn’t seem to experience any positive feeling at all 0 1 2 3

2. I found it difficult to work up the initiative to do things 0 1 2 3

3. I felt that I had nothing to look forward to 0 1 2 3

4. I felt down-hearted and blue 0 1 2 3

5. I was unable to become enthusiastic about anything 0 1 2 3

6. I felt I wasn’t worth much as a person 0 1 2 3

7. I felt that life was meaningless 0 1 2 3


Appendix M – Histograms to show distribution of variables


Appendix N – Scatterplots to show correlations between all variables in main analysis

SCI-R


HbA1c


Depression and Shame


Appendix O – Boxplot to show extreme outliers in HbA1c sample


Appendix P – Standardised residual graphs

Dependent variable: depression


IV: diabetes shame IV: body shame

IV: behavioural shame IV: character shame

Dependent variable: Self-care (SCI-R)

IV: Diabetes shame IV: Body shame

IV: body shame


IV: Behavioural shame IV: Character Shame

IV: depression

Dependent Variable: HbA1c

IV: diabetes shame

IV: behavior shame IV: character shame

IV: depression


Dependent variable: HbA1c-EO

IV: Diabetes shame IV: body shame

IV: behaviour shame IV: character shame


IV: Depression

Appendix Q – Guidelines for Authors

Instructions for Authors- Health Psychology

ManuscriptsThe manuscript title should be accurate, fully explanatory, and no longer than 12 words. The

title should reflect the content and population studied. If the paper reports a randomized clinical trial, this should be indicated in the title. The title of brief reports should start with the words "Brief Report".

The title page should include the names of all authors and their affiliations at the time the research was done. This information will be masked to ensure a blind peer review process by the editorial office. Authors should make sure that all other identifying information in the text of the paper is masked/removed prior to submission.

All manuscripts must include a structured abstract containing a maximum of 250 words with the following sections:

Objective (brief statement of the purpose of the study); Methods (summary of the participants, design, measures, procedure); Results (primary findings); and Conclusions (specific statement of the implications of the data).


Please supply up to five keywords or brief phrases after the abstract. The Introduction should not exceed 3–4 pages in length. The paper should be referenced appropriately but excessive citations should be avoided.

All research involving human participants must describe oversight of the research process by the relevant Institutional Review Boards and should describe consent and assent procedures briefly in the Methods section.

All statistical tests should include effect size whenever possible.First person language ("I", "we") should be avoided. Terminology should be sensitive to the

individual who has a disease or disability. The journal endorses the concept of "people first, not their disability." Terminology should reflect the "person with a disability" (e.g., children with diabetes, persons with HIV infection, families of people with cancer) rather than the condition as an adjective (e.g., diabetic children, HIV patients, cancer families). Nonsexist language should be used.

It is important to highlight the significance and novel contribution of the work. The translation of research into practice must be evidenced in all manuscripts. Authors should incorporate a meaningful discussion of the clinical and/or policy implications of their work throughout the manuscript, rather than simply providing a separate section for this material.

Health Psychology publishes a broad array of types of papers. Authors of qualitative and measure development papers should read the guidelines for these types of papers, noted below.

Reference

American Psychological Association (2014). Health Psychology: Instructions for

Authors: Manuscripts. Retrieved 08/06 2014. Retrieved from:

http://www.apa.org/pubs/journals/hea/.

PSYCHD CLINICAL PSYCHOLOGY

Major Research Project Proposal


An exploration of shame in young adults with Diabetes, and its

relationship with depression and treatment adherence.

Word count: 2868

Background and Theoretical Rationale

There are currently 3.2 million people in the UK with a diagnosis of diabetes;

around 10% of these have type 1 (Diabetes UK). Type 1 diabetes is most commonly

diagnosed between the ages of 10 and 14, meaning that the majority of sufferers have

added pressure in their teenage years of adapting to managing their condition

independently. Management of type 1 diabetes requires a high level of responsibility

on the part of the patient given that management regimens involve daily dietary and

lifestyle changes, carbohydrate calculations, multiple blood glucose tests and self-


injecting of insulin. This is likely to be even more difficult in the context of

adolescents exploring some activities for the first time, with limited prior experience

of how their condition may be affected; such as a variety of sports, cooking for

oneself, and drinking alcohol. It is therefore perhaps not surprising that low adherence

to condition self-management is a widespread issue, with adolescents often reporting

less adaptive condition self-management than children or adults (Bryden et al., 2001;

Johnson, Freund, Silverstein, Hansen, & Malone, 1990). When researched

longitudinally, problems with condition self-management present in adolescence have

also been shown to extend into adulthood (Kovacs, Goldston, Obrosky, & Iyengar,

1992) suggesting that this is a key period for targeted intervention. This research aims

to explore the role of shame as a potential contributing factor towards variability in

condition self-management for adolescents and young adults with type 1 diabetes.

Condition self-management in diabetes consists of four main aspects: insulin

administration, blood glucose testing, dietary adjustments and exercise. Many studies

examining condition self-management in diabetes have used HbA1c levels as an

objective index. HbA1c, or glycosylated haemoglobin, is measured routinely by blood

test at diabetes healthcare appointments. The test gives an indication of the patient’s

average blood glucose levels for the preceding 2-3 months (Diabetes Digital Media

ltd, 2014). Condition self-management can also be measured subjectively by asking

patients to estimate their adherence to certain aspects of their diabetes management

over a set period of time. A review of the literature highlighted a number of

commonly cited reasons for not adhering to diabetes regimens including fear of

inadvertently causing hypoglycaemia, a dislike of needles, fear of weight gain and a

lack of understanding of a complex regimen (Odegard & Capoccia, 2007). However


psychosocial factors such as experience of critical parenting style (Grabill et al., 2010)

and, most commonly, depression (Gonzalez et al., 2008) have also shown associations

with lower condition self-management.

Relatively little empirical work has been undertaken examining psychosocial

factors predicting variability in condition self-management. One potential factor is

low self-esteem. Rosenberg (1965) describes self-esteem broadly as “the direction of

self-attitude”. Leary and Macdonald (2005) conceptualise it as an “affectively laden

self-evaluation” (p.401) and distinguish it from related concepts such as self-concept

and self-efficacy on the basis that one can have high self-esteem whilst being aware of

one’s flaws. Self-esteem in the face of personal flaws might increase an adolescent’s

resilience whilst navigating potentially several unsuccessful initial attempts to self-

manage their condition, and give them the psychological strength to continue.

To date, 7 studies have used a validated global measure of self-esteem to

compare adolescents with diabetes with a healthy control group, but the findings were

surprisingly mixed. Three studies showed no significant difference in the mean self-

esteem score of adolescents with diabetes compared to those without (Jacobson et al.,

1984; Kellerman et al., 1980; Sullivan, 1978), one showed higher self-esteem in the

diabetic group (Zashikhina & Hagglof, 2013) and only one showed lower self-esteem

in the diabetic group (Seigel et al., 1990).

Furthermore, studies have found no link between self-esteem and HbA1c

levels either through the course of an intervention (de Wit et al., 2008), or as a

predictor of later HbA1c levels in a longitudinal study (Bryden et al., 2001).


Rather than prematurely concluding that self-esteem is not an important

underlying factor in either the psychological experience of young people with

diabetes, or condition self-management, a more detailed and nuanced ways of

conceptualising self-evaluative mechanisms should be explored. Self-esteem

measures such as the Coopersmith Self-esteem inventory (Coopersmith, 1967) only

measure the degree to which an individual largely likes or dislikes him/herself, and

are often contaminated by questions that overlap with perceptions of competence. By

instead considering the emotional states that underlie global self-evaluation, a

qualitative distinction can be made between those who recognise flaws in their

competence, and those who experience the intensely painful emotion of shame, and

the self-derogatory internal dialogue that accompanies it.

Tracy and Robins (2007a) suggest that for self-esteem, the opposing emotions

of shame and pride are likely to be crucial. Low self-esteem could be conceptualised

by a tendency to experience affective states of shame, and a lack of experience of

affective states of pride. This link is supported by findings that 83% of variance on the

Rosenberg Self-esteem Scale (Rosenberg, 1965) could be accounted for by self-

reported ratings of pride and shame (Brown & Marshall, 2001). Tracy and Robins

(2007) go on to explain the functional aspect of shame in the context of social

relationships by way of Sociometer theory (Leary & Baumeister, 2000). This theory

proposes that low self-esteem serves as an evolutionarily “warning” state which

motivates an individual to act to increase their social standing, and thus increase the

likelihood of reproductive success. Shame may be how we experience this warning

affectively.


Gilbert and Procter (2006a) highlight that shame relates not only to how we

feel about ourselves, but how we believe others view us, and believing that you exist

as fundamentally unacceptable in the minds of others is a painful belief to hold. For

an adolescent coming to terms with a chronic condition that marks them out as

different from their peers, and limits what they can do, there may be a vulnerability to

experiencing shame. This is supported by evidence that shame is more commonly

experienced in adolescence compared to later adult life (Orth, Robins, & Soto, 2010).

In addition, research has shown that in a group of adolescents, higher scores on a

measure of “personal fable”, that is, seeing your experiences as unique and separate

from others, was associated with decreased self-compassion (Neff & McGehee,

2010). Self-compassion has been routinely cited as the adaptive opposite to shame,

employing a differing and competing biological system, the enhancement of which,

through compassion focussed therapy, has shown some effectiveness in reducing

shame (Gilbert & Procter, 2006a).

Given the role of perceived perceptions of others inherent in experiences of

shame, it follows that some adolescents with diabetes may try to protect against

feelings of shame by avoiding condition self-management, in an effort to appear

“normal” and acceptable to others.

Terry and Leary (2011) argue that self-compassion mediates self-regulation of

health behaviours at every stage from being able to set more realistic goals, to an

increased ability to recover from a lapse. The second point is demonstrated in a study

by Adams and Leary (2007) who found that dieters who had received a self-

compassionate message prior to eating a high calorie snack not only reported less

subsequent distress but were able to compensate by eating less than those who did not


receive this message. This type of dietary decision is likely one that arises frequently

for those with diabetes, and suggests that those low in self-compassion, and thus high

in shame, may struggle to re-engage with positive condition self-management

following a lapse. In one qualitative study that interviewed patients with

hypercholesterolemia, shame emerged as a theme in relation to the emotions

experienced when given health messages by clinicians about diet and exercise. As

diabetes is another condition that requires patients to be engaged in regular

conversations about their condition self-management, it may be that they also

experience feelings of shame in these situations.

Shame has also consistently been associated with depression (Andrews, Qian,

& Valentine, 2002; Cheung, Gilbert, & Irons, 2004). One longitudinal study

highlighted shame related schemas as being predictive of depression nine years later,

suggesting that a belief about oneself that evokes shame may pre-date depression

(Halvorsen, Wang, Eisemann, & Waterloo, 2010). Therefore, as well as shame having

a potentially direct effect on condition self-management as noted above, it may also

be that depressive affect mediates the relationship between shame and self-

management. For example, shame-related depressive affect might decrease motivation

and produce problems with memory. It might also increase risk of hyerglaecemia

through the physiological effects of stress (Diabetes.co.uk, Diabetes Digital Media ltd,

2014).

Summary

Consistent self-care is vital to maintaining good health and quality of life for

people with diabetes. The mid-teenage and early adulthood years are important for

laying down the foundations for lifelong management. Independent condition self-


management can be challenging for young people and evidence suggests depression

might impact on self-management.

Self-esteem is one area that has been explored in those with diabetes and in

predicting condition self-management, but this has yielded mixed findings. An

alternative approach to studying global self-evaluation is to examine potential specific

underlying emotions that directly and indirectly influence condition self-management.

This research aims to explore the link between shame, depressive affect and condition

self-management in adolescents with type one diabetes.

Main Hypothesis

1. Higher shame will be associated with poorer condition self-management as measured (a) by subjective reports of diet, exercise, insulin administration and blood glucose monitoring; and (b) objective Hba1c levels.

2. Depressive affect will partially mediate the relationship between shame and

subjective and objective indices of condition self-management.

Participants

The inclusion criteria are as follows:

Young people between the ages of 16 and 25 (as this represents

a period of increasing independence in condition self-management)

Have a formal diagnosis of type 1diabetes

Have the ability to provide consent

The exclusion criteria:

The presence of any other diagnosed chronic physical illnesses

Proposed recruitment routes


Clinical Psychologists working in local Diabetes teams have been contacted.

Through liaison with the charity Diabetes UK, who offer assistance in

recruitment for diabetes related research.

Measures/ Interviews/ Stimuli/ Apparatus

Validated measures will be used as follows:

Experience of Shame Scale (ESS) (Andrews et al., 2002)

The ESS is a 28-item questionnaire that measures shame across three domains:

body shame, charactorological shame and behavioural shame. Good construct validity

and internal reliability have been shown for both the total scale and the three

subscales with an undergraduate sample (Andrews et al., 2002).There is insufficient

prior research to make specific hypotheses as to which of these subscales is likely to

be most strongly related with condition self-management. Therefore, the subscale

scores will each be utilised to address the hypotheses.

Depression Inventory of the Depression Anxiety and Stress Scale (DASS)

(Lovibond & Lovibond, 1995)

The DASS is a 42-item, self- report scale, split into 3 subscales which measure

depression, anxiety and stress. Each of these three areas are conceptualised as existing

on a continuum, rather than with certain cut-off points for diagnosis and a separate

score is given for each of the subscales. Factor analysis has confirmed the existence of

the 3 factor structure, and good convergent validity has been shown between the

depression subscale and the Beck Depression Inventory (BDI) (Beck et al., 1961). In


the present study, only the depression scale will be used. The DASS depression scale

has the benefit of focussing on the affective and cognitive elements of depression,

thus reducing the likelihood that somatic symptoms commonly associated with

diabetes, such as poor sleep and fatigue, would affect the results (Lovibond &

Lovibond, 1995).

Self-Care Inventory- Revised (SCI-R) (Weinger, Butler, Welch, & La

Greca, 2005)

This 15-item measure asks participants to rate their condition self-

management on a series of 5-point likert scales, varying from 1- “never do it”, to 5-

“always do it as recommended, without fail”. Items measure diet, exercise, glucose

monitoring, insulin administration, low glucose levels, and preventative aspects of

self-care. This measure has been adapted from the original SCI which was aimed at

adolescents and their parents. The updated, adult version was chosen as the age range

under investigation (16-25) more closely represents a young adult population as

opposed to an adolescent one. As such, parental reports are not included in the SCI-R.

The SCI-R shows high internal consistency (α =0.87) and concurrent and convergent

validity with existing measures in the expected directions (Weinger et al., 2005).

Glycolated Haemoglobin levels (Hba1c)

This is taken routinely by blood test at diabetes check-up appointments.

HbA1c gives a numerical value to glucose control over the preceding two or three

months, typically. Good control is generally considered to be at 6.5%, and levels for

non-diabetics range from 4-5.9 HbA1c can provide an additional means of measuring

self-care behaviours, as those who are adhering to their recommended diabetes self-


care are likely to have better control, and for this reason it is widely used in research.

However, it also may influenced by other factors, such as appropriateness of

medication and additional illness, so it will be used in conjunction with self-report

(Diabetes Digital Media ltd, 2014).

Participants are likely to have a copy of their latest reading. For those

participants who do not know their reading, this could serve as evidence of low

condition self-management, in as far as they are not aware of their current level of

control.

A series of demographic questions will be asked so that potential confounds

may be highlighted and further explored. These will be as follows:

Current Age

Age diagnosed with diabetes

Gender

Parental attendance at clinics (as a marker of parental

involvement in treatment)

Estimation of ownership of control (measured on a visual

analogue scale):

I manage my diabetes independently-------------------My parent(s)/carer

manages my diabetes

Presence and/or history of diagnosed mental health problems

Procedure


The study will be advertised to potential participants via psychologists in local

teams, and through Diabetes UK. Information and consent forms will be developed.

The inclusion of an incentive in the form of a prize draw will be considered to aid

participation. An online battery of the above questionnaires will be developed to

allow ease of completion for participants.

Once the data has been collected, analysis will be conducted, as discussed

below.

Contingency planning

It is a possibility that some patients may not know their HbA1c levels. If the

majority of participants are not aware of their HbA1c levels, absence of knowing this

could be coded dichotomously (know it/don’t know it) and be used as an additional

indicator of self-management using logistic regression analysis. This will still be

interpreted alongside the self-report measure outcome variable.

Project Costing

All measures are freely available from the authors. Permission will be sought

to use the measures in a secure, password protected online format.

£200 – prize draw to encourage participation

Ethical considerations


The study will invite participants to think about how they feel about

themselves and their condition management. This has the potential to be upsetting.

This will be made clear in the information sheet so that potential participants can

make an informed decision about whether they wish to do this, and if not, can of

course decline to participate at this stage.

The study also has the potential to alert participants to existing depressive

symptoms and/or experiences of shame. Details will be given in the debrief sheet

about mental health provision, a crisis telephone line number and the route to

accessing psychological therapy (e.g. by self-referral to their local IAPT or via GP).

This will be worded in a way that normalises depression/shame in diabetes and

highlights the benefits of seeking additional support.

All participant data will be assigned a number, and given that names/contact

details will not be taken anonymity is assured. All study information will be stored

securely and retained for 10 years as per University regulations.

R&D considerations

R & D departments of the Trusts in which recruitment is taking place will be

contacted and formal approval sought prior to commencing the study. This will be

done in parallel with NRES application.

Proposed Data analysis


A mediation analysis will be used. The first model will contain total shame

score as the predictor, HbA1c as the outcome, and depression score as the mediator.

As HbA1c represents a dichotomous outcome, logistic regression will be used. A

mediation analysis will be repeated with each of the ESS shame subscales (body,

character and behaviour) as the predictor. All models will then be repeated with the

SCI-R as the outcome, and multiple regression used to represent the continuous nature

of this outcome variable. The model below demonstrates this:

Shame total and subscales (ESS) HbA1c/ SCI-R

Depressive affect

(DASS depression subscale)

Between 90 and 196 participants should be sufficient to detect a medium

effect size in a mediation analysis (alpha = .05) at 80% power (Fritz & Mackinnon,

2007).

Dissemination strategy

The aim will be to publish in a peer-reviewed journal such as “Health

Psychology”, or a diabetes specific medical journal.

Involving interested parties

The most relevant group to consult is young adults living with type 1 Diabetes.

The charity Diabetes UK can provide access to contact details of some of their

members for the purposes of research. The charity has been contacted for advice on

contacting a small group of advisors to provide qualitative feedback on this proposal.


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Seigel, W. M., Golden, N. H., Gough, J. W., Lashley, M. S., & Sacker, I. M.

(1990). Depression, self-esteem, and life events in adolescents with chronic diseases.

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Sullivan, B. J. (1978). Self-esteem and depression in adolescent diabetic girls.

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Terry, M. L., & Leary, M. R. (2011). Self-compassion, self-regulation, and

health. Self and Identity, 10(3), 352-362.

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and emotion meet. In C. Sedikides & S. Spence (Ed.), The self in social psychology .

New York: Psychology Press.

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Zashikhina, A., & Hagglof, B. (2013). Self-esteem in adolescents with chronic

physical illness vs. controls in northern russia. International Journal of Adolescent

Medicine and Health, , 1-7.

Appendix A- Gant Chart to show proposed timeline of MRP

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Intro

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PSYCHD CLINICAL PSYCHOLOGY

Major Research Project Literature Review

Self-esteem in adolescents with diabetes:

A review

Word count: 7977


Abstract

Objective: The increased incidence of depression in people with diabetes is

well documented, though less is known about the psychological mechanisms

mediating this relationship. The current review considers the existing research

regarding the nature of self-esteem in people with diabetes, during the stage at which

comparisons of oneself to the peer group become heightened: adolescence. Method:

Following a search of several data-bases, 14 studies met the inclusion criteria of the

review which consisted of a mixture of designs including cross-sectional and

randomized controlled trials. A total of 1985 adolescents participated in the studies,

ranging in age from 12 to 19. Results: The findings of the review suggest no clear

evidence for adolescents with diabetes having lower global self-esteem than their

peers. Preliminary evidence suggests that those with more severe illness or longer

illness duration may be at greater risk of developing low self-esteem. Associations

were also found between a lower self-esteem and poorer diabetes related adjustment

to a number of social domains. Furthermore, three out of the four targeted

interventions considered showed a significant improvement in self-esteem pre to post.

Conclusions: Overall the findings are encouraging and suggest that diabetes does not

globally have a negative effect on an adolescent’s self-esteem. There are also

preliminary findings as to factors that may increase the likelihood of a low self-

esteem developing. However the usefulness and conceptualisation of global self-

esteem as a meaningful measure in this client group is considered, along with

recommendations for future research.


Statement of Journal Choice

This review article is intended for consideration for publication in the APA

journal “Health Psychology”. This journal publishes research, including reviews, that

examines the combination of biological, behavioural and psychosocial factors in

illness. This review, whilst mainly coming from a psychosocial perspective, also

touches on the interaction with biological factors.

Health Psychology also lists “child and adolescent health” and “lifespan

approaches” under a list of example topic areas. This complements the current review

as it looks at the developmental stage of adolescence and highlights the factors

specific to this stage that warrant developmentally specific research.


Introduction

This year, Diabetes UK (2014) estimated that there are around 35,000 children

and young people under the age of 19 in the UK currently diagnosed with diabetes.

Although Type II diabetes is on the rise within young people, 96% of people with

diabetes under the age of 19 have a diagnosis of Type I (Diabetes UK, 2014).

Type 1 Diabetes is a chronic illness that usually requires daily management

through monitoring and adjustment of insulin levels by injection or pump, as well as

careful dietary planning. Complications arising from poorly managed diabetes range

from immediate hyper or hypoglycaemia to longer term conditions such as

retinopathy and heart disease (NHS Choices, 2012a; NHS Choices, 2012b)

Given the seriousness of the disease, it is perhaps not surprising that a person

with the diagnosis of diabetes is approximately twice as likely to develop depression

as someone without diabetes (Mommersteeg, Herr, Pouwer, Holt, & Loerbroks,

2013). This co-morbidity presents additional risks and challenges as depression co-

morbidly occurring with diabetes, in adulthood, has been consistently associated with

both poorer glycaemic control (Lustman et al., 2000) and poorer treatment adherence

(Gonzalez et al., 2008).

One explanation for this increased prevalence of depression is that the

physical symptoms of low or high blood sugar in people with diabetes, such as

tiredness and irritability (NHS, 2012) link directly to experiences of low mood and

over a prolonged period, depression. Another possibility is that depression is over-

reported in people with diabetes because of the inclusion of somatic symptoms in self-


report measures such as the Beck Depression Inventory (Beck, Ward, Mendelson,

Mock, & Erbaugh, 1961) or the Patient Health Questionnaire-9 (Kroenke & Spitzer,

2002).

However a recent study found that although people with diabetes scored more

highly on depression measures than healthy controls, there was no difference in the

pattern of cognitive and somatic symptoms across the two groups (Stewart, Simmons,

& White, 2011). Furthermore, Seigel, Golden, Gough, Lashley and Sacker (1990)

found a larger difference in reported psychological symptoms than somatic symptoms

in a diabetic group compared to a healthy comparison group. This lends support to the

existence of a psychosocial mechanism mediating the onset of depression in diabetics.

One potential such mechanism, which has shown significant correlations with

depression in a general population, is low self-esteem (Watson, Suls, & Haig, 2002).

Rosenberg (1965) described self-esteem in its broadest sense as simply “the direction

of self-attitude” (p. 15). He acknowledged that self-attitude can be measured across a

number of domains of a person’s life, but self-esteem is the global direction of that

persons feeling toward the self. Leary and Macdonald (2005) described self-esteem as

an “affectively laden self-evaluation” (p.401) and distinguish it from related concepts

such as self-concept and self-efficacy on the basis that one can have a sense of high

self-esteem whilst still being aware of their flaws . As Rosenberg (1965) described,

high self-esteem is not about regarding yourself as good, rather as “good enough”.

Sociometer Theory (Leary & Baumeister, 2000) describes self-esteem

developing as part of an evolutionarily adaptive process. By holding an internal

gauge of our relational worth to others, if we notice that it is low, we are then

motivated to increase our social standing. This provides the evolutionary advantage of


subsequent group protection and reproductive opportunities. Leary and Macdonald

(2005) therefore describe the sense of current self-esteem that any one individual has,

as “the extent to which an individual has been accepted or rejected by people over

time” (p. 404).

Rosenberg (1965) describes adolescence as a key period in the development of

self-esteem as the mind’s eye is turned inward to evaluate the self in order to make

decisions about suitability of, for example, future occupations or romantic partners.

Rosenberg also noted that it is a time of “status ambiguity” (p. 4) where an

individual’s identity of being a child no longer fits, but they do not yet have the

independence that comes with adulthood.

Given this increased self-focus during adolescence, the question arises of the

effect of having a chronic disease such as diabetes on an adolescent’s self-esteem. In

addition, research has shown that in a group of adolescents, higher scores on a

measure of “personal fable”, that is, seeing your experiences as unique and separate

from others, was associated with decreased self-compassion (Neff & McGehee,

2010). Although this is a slightly different concept, it would fit that if an adolescent

sees themselves as fundamentally different from their peers and this affects their

ability to show self-compassion, there may well be a concurrent decrease in self-

esteem.

There has been much research into depression in diabetes, but there is limited

research that looks specifically at self-esteem in this population, with much of it

failing to clearly define self-esteem as a separate construct to either “self-concept” or

“self-evaluation”.


The main aim of this review was to further explore the existing literature on

the nature of self-esteem in adolescents with diabetes. Given that the transition from

primary to secondary education represents a period of increased autonomy and a shift

towards spending increased amounts of time with the peer group as opposed to the

family, the current review was focussed on research with the lower age range of

participants starting at the beginning of secondary education (11) and spanning to

roughly the end of adolescence (19). 11 is also the usual age of transition to middle

school in the US, where fifty percent of the studies were conducted. The initial aim

was broad, but following evaluation of the existing literature, it was possible to refine

the questions to the following:

1. Is a chronic disease such as diabetes associated with a lowered

self-esteem in adolescents?

2. Does diabetes differ, with regard to self-esteem, from other

chronic diseases experienced in this age range?

3. What interventions have successfully addressed self-esteem in

this population?

4. What other factors are likely to mediate the likelihood of an

adolescent with diabetes developing low self-esteem?

Method

Search terms were arrived at firstly by defining self-esteem as the construct of

interest. Although the review aimed to avoid inclusion of studies measuring other

“self” terms that differ from self-esteem, “self-confidence” was added to capture

further papers as it closely overlaps with Rosenberg’s (1965) definition of self-


esteem. However, as discussed below, the criteria of including a validated self-esteem

measure was still required, and in reality “self-confidence” did not return many

additional papers. Only studies looking at self-esteem in relation to diabetes were

considered so the search term “diabet*” was also added to capture studies mentioning

different phrases for the disease such as: diabetes, diabetic, diabetes mellitus or type 1

diabetes.

Finally the “NOT” criterion were used to eliminate what was initially an

expansive search result, largely consisting of unrelated studies looking at the medical

management of diabetes and associated medical issues. The final search terms “self-

esteem OR “self-confidence” AND diabet* NOT insulin, medical, “medical

intervention”, “eating disorder*”, gene*” were used to arrive at the first set of studies.

The data-bases Psyc-Info, Medline, Cinhal and Web of Science were all searched

between 12/02/14 and 14/02/14.

On all but one database, the age criteria of adolescence (13-17) was added and

for Web of Science, which did not have this option, the following additional terms

were used instead: adolescen* OR teen* OR "Young adult*" OR "Young person*"

OR youth. Although the inclusion criteria for the review was slightly broader than

ages 13-17, this search would still have found studies where the age range included

but also went beyond this bracket. Diabet* was tagged as a subject term on all

databases other than Web of Science (which does not have this option) to limit the

search to studies which focussed on diabetes as a main subject.

This first search yielded a total of 135 potentially eligible studies from the

data-bases searched (See Figure 1). These studies were screened at title and abstract

level and studies that were obviously unrelated to diabetes and self-esteem in


adolescence were excluded. All studies that were not from a peer-reviewed journal or

were not written in English were also excluded at this stage, along with duplicates.

It was subsequently decided that relevant studies looking at people with

diabetes and eating disorders should not be excluded. Although the studies in this area

that the search initially returned were unrelated to self-esteem, excluding the term

completely may result in missed relevant articles, particularly as self-esteem is a well-

recognised factor in eating disorders (Fairburn, Cooper, & Shafran, 2003). Therefore,

an additional search was carried out with the same phrasing as before, removing the

NOT eating disorder* criteria and adding an AND criteria of; “eating disorder* OR

anorexia OR bulimia. 19 further articles were retrieved in total from the same

databases as originally searched, and although one met the inclusion criteria in an

initial title and abstract screen, it was later removed for not meeting the criteria at full

text screen.

Inclusion and Exclusion Criteria

38 studies were left after the initial screening for full text consideration.

Studies were included that reported primary data of the level of and/or contributing

factors towards the self-esteem of adolescents with diabetes. There is some debate in

the self-esteem literature about the overlap between the varying conceptualisations of

self-regard (Leary & MacDonald, 2005) and this issue will be discussed further in the

Discussion section of this review. To prevent dilution of results by potentially

including a number of overlapping but slightly differing concepts, the criteria was set

such that the studies must include a validated measure stating that it specifically

measures global self-esteem. As a result, a number of studies were excluded that


claimed to be measuring self-esteem but instead used “self-concept” or “self-

perception” measures, as were qualitative studies.

A subset of studies also included a broad age range of children and

adolescents, for example “under 18” or “8-15 years”. In order to avoid variation in

developmental stage confounding results, studies including participants outside of the

11-19 age bracket were excluded.

Lastly, studies were excluded that selected participants on the basis of any

other factor which could systematically affect self-esteem, for example; short stature.


Figure 1: Flowchart summarising the searching process

Potentially eligible records identified through first database search: 135

Medline: 30Psyc Info: 15Web of Science: 73Cinhal: 17

Exclusion of duplicate records:

38

Potentially eligible records: 116

Excluded: following title/ abstract screen: 81

Full text articles assessed for eligibility: 38

Exclusion of articles after full text screening: total n= 26

Reasons:Inclusion participants outside

of age range 11-19 (n=12)Does not use a validated self-esteem measure or subscale

(n=8)No primary data (n=3)

Looked specifically at Diabetes and short stature (n=1)Population did not have

diabetes (only at risk of) (n=1)Obesity as an additional factor

(n=1)

Additional potentially

relevant articles that were

highlighted as relevant from the text of full screen

articles: 3

Articles included in the review: 14

Relevant articles found from search of reference

lists of all final papers and google scholar “citing articles” searches: 2

Additional search of all above databases including eating disorders: 19


Quality Criteria

The Standard Quality Assessment Criteria for evaluating primary research

papers (Kmet, Lee, & Cook, 2004) were used as a reference point for broad

comparisons between papers. These criteria were developed for use when making

comparisons across a range of quantitative designs and include consideration of

sample selection, study design and control of potential confounds (Kmet et al, 2004).

Results

An overview of the 14 included studies is presented in Table 1. The dates

published range from 1978 to 2013, with 86% published more than five years ago.

The studies contain a total of 1985 participants, which has been adjusted to allow for

the four studies which use overlapping samples (de Wit et al., 2008; de Wit et al.,

2010; Sullivan, 1979b; Sullivan, 1978). The overall reported age ranges were between

11 and 19, though the exact age range was not reported for two papers, with one

giving average ages of 14.9 (diabetic) and 15.8 (oncology) and stating that all

participants were adolescents (Török, Kökönyei, Károlyi, Ittzés, & Tomcsányi, 2006)

and another stating that diabetic participants may have occasionally exceeded high-

school age, due to the scope of the clinic they were recruited from (Kellerman,

Zeltzer, Ellenberg, Dash, & Rigler, 1980). Additionally, given the longitudinal nature

of Bryden et al (2001), the second measurement was taken when the participants were

in the 20-28 age range. However this study still provides relevant information as to

the potential longer term course of self-esteem, with a baseline measured in

adolescence.


Fifty percent of the studies were conducted in the United States. The

remainder were conducted in various European countries, all only appearing once,

with the exception of de Wit (2008) and de Wit (2010) who report findings from the

same sample in the Netherlands.

In terms of design, seven studies employed a cross-sectional design in which

the self-esteem of a diabetic group was compared with a sample of either adolescents

who were healthy, or adolescents with other chronic diseases. One study used a cross-

sectional design, but just looked at factors within a sample of adolescents with

diabetes, without reference to a comparison group. However, as the same sample was

used in another study by the same author, with a comparison group, some

comparisons can be made (Sullivan, 1979b; Sullivan, 1978). Five studies reported the

outcomes of interventions designed to improve psychological functioning in

adolescents with diabetes. Due to the scope of the review, only changes in self-

esteem and other factors related to this are reported. Of these five studies, three made

comparisons with a control group, of which two involved random allocation to

groups. The remaining two reported the pre and post measures of the treatment group.

The remaining study employed a longitudinal design only measuring self-esteem at

time one, but then using this as part of a model to assess whether factors such as

Hba1c levels1, and mental health status could be predicted from baseline scores.

Half of the studies measured self-esteem using the Rosenberg self-esteem

scale (RSES) (Rosenberg, 1965), with one additionally using the “I think I am”

(ITIA) questionnaire (Ouvinen-Birgerstam, 1985). A further four used the

Coopersmith Self-esteem Inventory (CSEI) (Coopersmith, 1967) and another used

1 Hba1c refers to the level of glucose in the blood during the preceding 2-3 months, as tested by a blood sample. It is routinely used as an indication of longer term diabetes control (Diabetes UK, 2016a).


form b of the CSEI, a shorter version of the same scale (Coopersmith, 1967). The

remaining two papers used the self-esteem subscale of the Children’s Health

Questionnaire-87 (Landgraf, Abetz, & Ware, 1996). As a result of the range of

European countries included in the studies, three used translated versions of the above

measures.

It is of note that out of the papers that used the RSES, only four used the

original scoring criteria as set out by Rosenberg (1965) with Guttman scale scores out

of ten and a higher number indicating lower self- esteem (Cavusoglu, 2001; Seigel et

al., 1990; Sullivan, 1979b; Sullivan, 1978). The remaining papers that used the RSES

used an additive scoring system, with higher scores indicating higher self-esteem.

This creates an added level of complication when it comes to comparing across

studies, and brings into question the validity of the studies diverging from Rosenberg

(1965)’s original scoring system. However Sinclair et al (2010) recently analysed

properties of the RSES using the additive scoring system and found high internal

consistency (Cronbach’s alpha coefficient: 0.91) as well as favourable item

convergent validity and item discriminant validity. Rosenberg (1965) also found high

reproducibility (93%) and correlations in the expected directions with existing

measures of, for example, depression and answers to questions such as “what do

others think of you?” It may be that both scoring systems are valid, and the second

has at least been more rigorously tested with a broader sample.

Table 1. Overview of included studies


ReferenceTotal N Country

Range of age

Design Measure used

Bryden et al. (2001) 76 UK 11 – 18* L CSEI

Cavusoglu (2001) 55 Turkey 13-18 CS RSES (Turkish)Colquhoun et al. (1998) 14 Ireland 14-16

PPCG CSEI form b

de wit et al. (2008) 41 Netherlands 13-17 RCT CHQ-87 S

de wit et al. (2010) 81 Netherlands 13-19 RCT CHQ-87 S

Hauser et al. 1979 216 USA 11 to 19 CS CSEI

Herskowitz (1990) 6 USA 15-19 PP CSEIJacobson et al. (1984) 390 USA 12-16 CS CSEIKellerman et al. (1980) 517 USA 11 - 18 CS RSES

Seigel et al. (1990) 180 USA 12 to 18 CS RSES

Sullivan (1978) 205 USA 12 -16 CS RSES

Sullivan (1979) 105 USA 12-16 CS RSES

Torok et al. (2006) 97 Hungary no data PP RSES (Hungarian)Zashikina et al (2013) 148

Northern Russia 13 - 16 CS

RSES and ITIA (Russian)

Note: RSES: Rosenberg self-esteem scale (Rosenberg, 1965);CSEI: Coopersmith self-esteem inventory (Coopersmith, 1967); CSEI form b: Shortened version of CSEI (Coopersmith, 1967); ITIA: I Think I AM (Ouvinen-Birgerstam, 1985); CHQ- 87 S: Child Health Questionnaire-87subscale (Landgraf et al., 1996); CS: Cross-sectional; PPCG; Pre-post control group design; PP: Pre-post, no control group design; RCT: Randomised control trial; L: Longitudinal; *age 20-28 at follow up.


Self-esteem of diabetic adolescents compared to healthy controls

Table 2 shows the six studies that compared the self-esteem of adolescents

with diabetes to that of healthy adolescents. The findings were mixed. Effect sizes

were computable from four out of the seven reported results and ranged from a

moderate effect in the direction of adolescents with diabetes having higher self-

esteem (-0.456) to a small effect in the direction of adolescents with diabetes having

lower self-esteem (0.251). Only one study reported the self-esteem of the diabetic

group to be significantly lower than that of the healthy controls. Three studies

reported no significant difference between the average self-esteem scores of the two

groups, whilst another study reported significantly higher self-esteem in the diabetic

group on two separate measures. A final study reported a “slightly higher” average

self-esteem of the diabetic group but as no significance tests were reported, this was

assumed to be non-significant (Hauser et al., 1979a).

Demographic and disease related data for the studies which used comparison

groups are shown in Table 3. Of the studies which reported no significant difference

in self-esteem of adolescents with diabetes compared to that of healthy adolescents,

there were some additional between-group differences, for example a larger

proportion of participants of high socio economic status in the healthy group

(Jacobson, Hauser, Powers, & Noam, 1984; Sullivan, 1978). Kellerman (1980), also

reported that the diabetes group, along with two other disease groups, had

significantly less white participants than the healthy group. Although repeated

analyses excluding black participants and found no significant change to the results,

this did not account for the Hispanic participants. It may be that, given the age of the

study “black” referred to all ethnic minorities, but it is unclear if this is the case. It


would be purely speculative to comment on whether group differences resulted in

non-significant findings, but nonetheless an additional difference between comparison

groups introduces the possibility of confounds, whether that represents a potential

difference in self-esteem across ethnic groups, or different conceptualisations of what

self-esteem is.

One notable detail in Jacobson et al (1984), who also found no significant

difference between groups, is that the diabetic group were “Insulin Independent” and

those that were recruited from hospital were admitted for intensive education and

treatment adjustment and were “not acutely ill”. This contrasts with Seigel et al

(1990)’s diabetic sample (in which the diabetic group had lower self-esteem than the

healthy group) whom had been selected on the basis of having been hospitalized at

least twice in the previous year, and thus experiencing increased severity. It may be

that the diabetes of the adolescents in Jacobson et al (1984)’s study was sufficiently

mild to cause minimal impact on their life, and their self-esteem. This suggests that

disease severity may be one factor which influences the likelihood of an illness group

reporting a lower self-esteem than a healthy group.

There were large disparities in terms of sample size; Sullivan (1978) had the

most balanced group numbers with 105 adolescents in the diabetic group, and 100 in

the healthy group. Jacobson et al (1984) was the only study to have considerably more

diabetic participants than healthy participants and the remaining four all had a much

larger number of healthy participants than diabetics. Given that studies with a range of

results fell into the latter category, it doesn’t appear as if this systematically affected

the results in one particular direction.


The majority of studies gave no particular comment on, overall, whether the

groups showed high or low self-esteem, and no standardised cut off points were set by

Rosenberg (1965). However one can assume that the healthy controls provide a local

norm, and if the disease groups do not differ significantly from these (as the majority

did not) they could be considered to have average self-esteem. This does assume that

the healthy group was a representative sample, however, and in many studies these

population came from a single school, so this may not be the case. The one study that

found a lower average self-esteem in the adolescents with diabetes (Seigel et al.,

1990) did report that across all disease groups 79% of participants were classified as

having low self- esteem, compared to only 19% of healthy controls.

None of the studies reviewed specifically recruited participants who suffered

with depression, and thus no comparisons of those with clinically significant

depression and those without were made. Instead, self-esteem means were averaged

across groups and these Means formed the basis of the comparison. The implications

of this will be discussed further in the Discussion section of this review.


Table 2: Mean self-esteem scores of adolescents with diabetes compared to that of healthy adolescents

ReferenceDiabetes alone or pooled with other

diseases*Healthy controls Mean S-E (SD)

Diabetic groups mean S-E (SD)

Measure Result Effect size

Hauser et al (1979) Diabetes Alone. Not reported Not reported CSEID group slightly higher***

N/A

Jacobson et al (1984) Diabetes Alone. 70.9 69.5 CSEI No sig difference N/A

Kellerman et al (1980) Diabetes Alone 30.2 (4.3) 30.4 (5.2) RSES No sig difference d= -0.042

Seigel et al (1990) Pooled Not reported Not reported RSES D group sig lowera N/A**

Sullivan (1978) Diabetes Alone 2.12 (2.07)† 2.63 (1.99)† RSES No sig difference d= + 0.251

Zashikina et al (2013) Diabetes Alone 30.28 (4.10) 32.04 (4.31) RSES D group sig higherb d= - 0.418

Zashikina et al (2013) Diabetes Alone 54.15 (32.03) 69.04 (33.29) ITIA D group sig higherb d= -0.456

Note: D= diabetes group; S-E= self-esteem; RSES: Rosenberg self-esteem scale (Rosenberg, 1965);CSEI: Coopersmith self-esteem

inventory (Coopersmith, 1967); CSEI form b: Shortened version of CSEI (Coopersmith, 1967); ITIA: I Think I AM (Ouvinen-Birgerstam,

1985)a p<0.001; b p<0.01; *only results of pooled analyses included where additionally no sig difference was shown between diabetes and

other disease groups;** The relevant information to compute effect sizes was not reported;***No significance statistics reported; † higher

score indicates lower self-esteem; + d score indicates healthy controls have higher self-esteem than diabetic group and – d score indicates


Study Group NSampl

e%

maleMean age

% white SES Severity

Seigal (1990)

Healthy 100 LC

No data- states groups did not differ significantly in

gender, age or race

Mainly low

N/A

Asthma 40 OCMainly low

Recently severe*

Sickle Cell Disease 20 OC

Mainly low

Recently severe*

Diabetes 20 OCMainly low

Recently severe*

Jacobson (1984)

Healthy 62 LS 42 14 no data

68% High SES

N/A

Diabetes 271I***&

SC 49.8 14 no data

24% High SES

IIDM*

Hauser (1979)

Healthy53 +n

no data 35.8 13-14 no data

mainly middle class N/A

Diabetes 163 SC/C 50.3 13 no data

mainly middle class

no data

Sullivan (1978)

Healthy 100 LS 0 13.8 no datamiddle class

N/A

Diabetes 105 SC 0 13.7 no data rangeno data

Table 3: Demographic and health variables across studies utilising cross-

sectional design


Zashikina et al (2013)

Healthy 301 LS 44 14.64 no data

measured but not

reported for

individual groups

N/A

Asthma 50 OC 54 14.29 no data 50% severe

Epilepsy 48 OC 40 14.97 no data 27.1% severe

Diabetes 50 OC 56 14.15 no data 42% severe

Kellerman et al (1980)

Healthy 301 LS 46.8 15 79 no data N/A

Oncology 30 C 60 15.3 73.3 no data severe:26.7

%

Cardiology 30 C 50 16.3 36.7 no data Severe:3.6%

Cystic Fibrosis

23 C 65.2 15.9 91.3 no data Severe:17.4

%

Nephrology 25 C 30.4 30.4 34.8 no data Severe: 12%

Rheumatology

30 C 40 40 63.3 no data Severe:

6.7%

Diabetes 30 C 56.7 15.4 43.3 no data Severe:33.3

%

Cavusoglu (2001)

Oncology (Leukemia)

22 OC 66.7 14.2 no datano

overall SES data

75.8% treatment

Diabetes 22 OC 59 14.7 no datano

overall SES data

100% check-ups

Torok et al (2006)

Oncology 52 SC 42.3 15.9 no data no data no data

Diabetes 45 SC 46.7 14.8 no data no data no data

* at least 2 hospitalizations in the last year; ** Insulin Independent Diabetes Mellitus; *** admitted for intensive education and alterations in treatment rather than acute illness; LS- local school; OC- outpatient clinic; C- clinic (does not specify in or outpatient); SC- specialist diabetes camp; I- inpatient for management of diabetes; +n- norms data.


Self-esteem in adolescents with diabetes, compared to other disease groups

Six studies compared the self-esteem of adolescents with diabetes to that of

adolescents with other chronic diseases (Table 4). Nine chronic diseases were

represented. A non-psychotic adolescent psychiatric inpatient population was also

included as a comparison group in one study (Jacobson et al., 1984). This finding is

not reported in the review as this group is not comparable on the basis of physical

illness.

No significant difference was found in the self-esteem levels of adolescents

with diabetes compared to adolescents with cancer. Effect sizes ranged from a

negligible difference in the direction of lower self-esteem in those with diabetes

(d=0.21) to moderately, but not significantly in the direction of lower self-esteem in

the oncology group (0.525).

The latter study (Cavusoglu, 2001) reported that the mean diabetes group self-

esteem score was “high” and the cancer group mean “moderate” though a small

sample size of only 22 in each group may have prevented the difference reaching

significance. In this study, there were additional differences in terms of severity as

only 18.2% of the participants with cancer were able to attend school, compared to

72.7% in the diabetic group. Additionally, all of the participants with diabetes were


attending the clinic for routine medical check-ups, whereas 75% of those with cancer

were actively receiving treatment at the clinic. It may be that the severity of the illness

is the more important factor than the diagnosis, as in contrast, the only effect size in

the direction of the oncology group having higher self-esteem was in Kellerman et al.

(1980)’s study (effect size +0.21 ns) in which the illness of 63.3% of the oncology

group were indicated as “mild” in comparison to only 29.6% of the diabetic group.

The average self-esteem in the epilepsy group was shown to be significantly

lower than the diabetic group on two measures (RSES and ITIA) used with the same

population (Zashikhina & Hagglof, 2013). Interestingly, the effect sizes shown by the

two measures differed substantially with the RSES showing a moderate effect size of

d= -0.630 and the ITIA showing a much stronger d= -0.924. The ITIA also appeared

to be more sensitive when comparing asthma to diabetes. Participants with asthma

scored significantly lower on it whereas no significant difference was found with the

RSES. The ITIA data was included on the basis that Zashikhina and Hagglof (2013)

describe it as measuring self-esteem but Norwicka et al. (2009) describes it as being

derived from a mixture of questions from the RSES and Piers-Harris Self-Concept

scale (Piers & Harris, 1967). Unfortunately it is not possible to examine the questions

as an English version was unavailable, but it could be that this scale measures a

cognitive appraisal of abilities, as opposed to global liking of oneself, which in turn

may show more discrepancies between the disease group based on the specific

physical limitations of the disease.

None of the other reported chronic disease group comparisons yielded any

significant mean differences in self-esteem.


Table 4: Self-esteem in other chronic disease groups, as compared to those with diabetes.

Reference Comparison groupComparison group Mean and

(SD)Diabetic groups mean

SEMeasur

e Result Effect size

Seigel (1990) Sickle cell 75% low† 80% low† RSES No sig difference N/A

Asthma 80% low† 80% low† RSES No sig difference N/A

Zashikina et al (2013)

asthma 31.36 (4.16) 32.04 (4.31) RSES No sig difference d= -0.160

epilepsy 29.71 (2.95) 32.04 (4.31) RSES D group sig higher * d= -0.630

asthma 56.13 (26.46) 69.04 (33.29) ITIA D sig higher* d= -0.429

epilepsy 42.6 (23) 69.04 (33.29) ITIA D sig higher ** d= -0.924

Kellerman et al (1980)

Oncology 31.4 (4.3) 30.4 (5.2) RSES No sig difference d= + 0.21

Cardiology 29.9 (3.9 30.4 (5.2) RSES No sig difference d= -0.109

Cystic Fibrosis 30.9 (3.8) 30.4 (5.2) RSES No sig difference d= + 0.110

Nephrology 32.4 (2.8) 30.4 (5.2) RSES No sig difference d= +0.479

Rheumatology 30.4 (5.1) 30.4 (5.2) RSES No sig difference d= 0

Cavusoglu (2001) Oncology (Leukemia) 2.82 (0.92) 2.27 (1.16) RSES No sig difference d= - 0.525

Torok et al (2006) Oncology 27.19 (3.65) 28.61 (4.26) RSES No sig difference d= - 0.358


Note:*p<0.05; **p<0.001:, +comparison group had higher self-esteem;- diabetic group had higher self-esteem; †mean not given, reported as percentages of group who fell into low self-esteem category.


The effect of targeted self-esteem interventions

Table 5 shows the results of four studies that assessed the effect of a

psychosocial intervention on self-esteem levels. None of the interventions were

designed specifically to improve self-esteem; rather self-esteem was measured as part

of a battery of psychosocial measures to evaluate existing specialist camping

programmes. Alternatively self-esteem improvement was cited as a broad aim of

therapeutic discussion based interventions amongst addressing other “psychosocial

issues”.

Three of the four studies showed a significant improvement in self-esteem

either at post-intervention or follow-up. Two of these employed fully randomized

controlled designs and showed significantly higher self-esteem at either post-test or

follow up in the treatment group, taking into account baseline scores. Both of these

interventions were discussion based; one consisted of four weekly groups, in which

video footage of an adolescent talking about their diabetes preceded an open

discussion about the groups coping (Colquhoun, Drury, Cregan, & Keenan, 1988).

The other involved three extended clinic appointments over the course of a year, in

which, the adolescents completed “health related quality of life” questionnaire would

serve as an opening into a discussion of any psychosocial areas they felt their diabetes

was impacting upon (de Wit et al., 2008; de Wit et al., 2010).

The remaining two studies described outdoors based “camps” which both

aimed to foster a sense of achievement through engagement in novel outdoors

activities. Torok et al. (2006) did show a significant mean increase in self-esteem for

participants at the end of the camping programme, but without a control group it

cannot be assumed that their self-esteem would not have naturally increased at this


time. Given that the camp only lasted eight days, this is unlikely, but cannot be ruled

out.

The remaining camp-based study which showed no improvement in self-

esteem failed to re-administer the self-esteem measure until 7-11 months later, in

which time any number of confounding events could have occurred to influence self-

esteem (Herskowitz, 1990).

De Wit et al. (2008) found that, during the first year their study, improvement

in self-esteem showed no association with an improvement in A1C levels (an

indicator of glycaemic control, and thus control of diabetes). A main aim of

psychosocial diabetes interventions is to indirectly improve diabetic self-care, but in

this case it appears that this intervention did not achieve this aim. There was a return

to baseline self-esteem scores one year after the intervention sessions (deWit et al.

2010). This suggests that perhaps an intervention with this level of low intensity is not

enough to cause lasting change to self-esteem.


Table 5 The effect of Interventions on self-esteem level

Study N IPre-test Mean

(SD)Post-test Mean

(SD) Result. Follow-up ResultSelf-esteem Measure used

TG CG TG CGCG- pre-post

TG pre-post

post T and C

TG Mean(SD)

CG Mean (SD)

TG pre-follow-up

TG post-follow-up

Colquhoun (1988) 14 GD CSEI-

form b

measured and included in analysis

but not reported18.71† 18.29† N/A N/A

Borderline sig

difference*

20.57 (SD: 4.07)

not reported N/A

self-esteem

sig higher*

*

Herskowitz (1990) 6 OB CSEI. 83 (4) 75 (3) N/A N/A N/A N/A N/A

7-11 months: 84

(5)76 (3) not

sig N/A

de wit et al (2008 & 2010)

81 Q &D

CHQ-87

subscale

74.84 (10.43)

75.97 (10.63

)

79.94 (10.44)

75.97 (8.71)

non-sig

TG self-esteem sig

improved***

TG self-esteem sig higher **

73.72 (12.77) N/A N/A

Self-esteem

sig lower*

Torok 97 SC RSES 28.61 (4.26) NC 30.20

(4.50) NC NCPost-test

Sig higher ***

NC 2 months: 29.20 (4.52)

no control N/A N/A

Note: N: Total number of participants in treatment group (and control if applicable), I: Intervention; GD: Group Discussion; OB: Outward bound course; Q & D: questionnaire and discussion; TG: treatment group; CG: control group; NC: No Control group;* P=0.06**p<0.05; ***p<0.01; † adjusted mean taking into account pre -treatment scores.


Other factors linked to self-esteem

Table 6 summarises other variables reported to be associated with self-esteem.

Only variables which were reported in three or more papers are depicted in the tables,

the remainder will be discussed in the text.

The most common reported factor was gender, which was reported in four

papers. The findings were mixed, with two studies reporting that females with

diabetes had significantly lower self-esteem than males, and the remaining two

finding no significant difference. However of these latter two studies, one pooled the

results with oncology patients (Török et al., 2006) and the other reported that twice as

many males had “high self-esteem” than females (Cavusoglu, 2001) but perhaps due

to low numbers, no significant difference was found. Interestingly, although

Kellermen et al. (1980) found lower self-esteem in females, they found that a group x

sex interaction effect was non- significant, suggesting this pattern is no different to

that of healthy adolescents.

Only one study (Zashikhina & Hagglof, 2013) found a significant association

between increased age and lower self-esteem. The exact opposite result was found in

the same study within the epileptic group, suggesting a role for disease-specific

variables on the course of self-esteem. Two other studies failed to find any significant

association with age, however, implying that conclusions regarding age are

premature. Furthermore, Sullivan (1979b) looked at age of onset (i.e. in childhood

through to adolescence) in relation to self-esteem, but no significant association was

found.


Perhaps a more useful way to conceptualise the age effect observed is in terms

of illness duration. Two studies found an association between longer illness duration

and lower self-esteem, though effect size was reported for only one of these and was

small (Hauser et al., 1979b). It is of note that the latter study reported a positive

coefficient, but described the association in the discussion section as a negative one.

This review has therefore tentatively interpreted the association as negative, and the

coefficient has been altered to represent this in Table 6. Zashikhina and Hagglof

(2013) indicated that they included disease duration in their general linear modelling,

but as results are not reported, it may be assumed that they were non-significant.

Another factor that may mediate the relationship between age and self-esteem

is ego-development level, which can differ between adolescents of the same age.

Hauser et al (1979a) found that adolescents with diabetes who were also in the pre-

conformist stage had significantly lower self-esteem (p < 0.01) than the other two ego

development groups measured (conformist and post-conformist). These findings are

supported by Jacobson et al. (1984) who found that in a multi-way ANOVA, ego

development level emerged as having a significant main effect on self-esteem

(p=0.0006) in which self-esteem increased linearly from pre-conformist, to

conformist and post-conformist. This was despite finding no effect for age.

An interesting finding reported by Kellerman et al. (1980) was that those with

higher self-esteem were more likely to report a lower level of anxiety and an internal

locus of control. This was reported globally across disease and healthy groups, not

specifically for those with diabetes, but does suggest a potentially important

mediating factor.


Severity was only measured explicitly in relation to self-esteem in two studies,

revealing conflicting findings. Zashikhina and Hagglof (2013) found that severity was

the most significant predictor of self-esteem in the diabetic group. In contrast,

Kellerman et al. (1980) found no significant association. However taken with the

finding that the only study that found adolescents with diabetes had significantly

lower self-esteem than healthy adolescents was the one which specifically selected

those with increased severity (Seigel et al., 1990), severity does appear to have a role.

Sullivan (1979b) looked at self-esteem in relation to psychological and social

adjustment to diabetes across a number of domains during the development of the

Diabetes Adjustment Scale (DAS). The DAS is a 37-item questionnaire which

assesses adjustment to diabetes across six different life domains, for example family

and school. This generates scores relating to each of these domains, as well as an

over-all adjustment score.

When adjustment scores were spit into “good” and “poor” categories, not

only did those with “poor” over-all adjustment have significantly lower self-esteem

than those with “good” adjustment (p<0.001), but this pattern extended across the

subcategories of adjustment in peer relationships (p<0.001) negative attitudes towards

diabetes and dependence-independence issues (p<0.01).

Strong correlations were also found between depression and self-esteem

scores. However, when self-esteem and DAS scores were included in an ANOVA

alongside depression scores, as measured by the Beck Depression Inventory (Beck et

al., 1961) there was neither a significant effect of self-esteem on adjustment (F=3.3,

p=ns) nor an interaction effect between self-esteem and depression (F=0.43, ns).


However within this ANOVA there was still a significant main effect for depression

on adjustment (F=8.01, p<0.01).

Another finding of Sullivan (1979b) was that participants who reported an

“excellent” relationship with their mother had significantly higher self-esteem

(p<0.01) than those who reported a “good, fair or poor” relationship. The same

pattern was even stronger for reported relationships with fathers (p<0.001).

Sullivan’s (1979b) findings show a promising insight into the factors that may

influence and interact with self-esteem in adolescents with diabetes. However

causality cannot be assumed from a cross-sectional study, and therefore conclusions

cannot be drawn as to whether poor diabetic adjustment lead to lower self-esteem, or

an existing lower self-esteem contributed to poor adjustment following diagnosis.

Additionally, in the absence of an equivalent general social adjustment questionnaire

administered to matched healthy adolescents, it cannot be assumed that this pattern is

unique to those with diabetes. Poor diabetic adjustment in the context of, for example,

peer relationships, could be just one element of over-all poor adjustment to peer

relationships for that individual.

Finally, Bryden et al. (2001) reported that self-esteem was linked to

"concurrent psychological adjustment" seemingly measured by a global score of

depression anxiety and aggression. Self-esteem was not one of the psychological

variables that predicted later Hba1c levels, but unfortunately self-esteem was not

measured at time 2, so a longitudinal picture of self-esteem course was not possible.


Table 6. Other factors associated with self-esteem

Reference Gender Age Illness duration

P Direction P Direction r or p Direction

Bryden et al. (2001)

p<0.03

Females sig lower than males

Cavusoglu (2001)

p=0.36 No significant difference*

de wit et al. (2010) =0.90 0.029 Lower self-esteem predicted by

longer illness duration†

Hauser et al. (1979)

r = -0.15a

p<0.05

Self-esteem negatively associated with duration

Jacobson et al.

(1984)NR No significant effect NR NR No significant effect

Kellerman et al.

(1980)NR Females sig lower than

males*** NR No significant effect

Torok et al. (2006) NR No significant difference**

Zashikina et al.

(2013)

p<0.01

Older age predicted lower self esteem

NR= Not Reported; *Twice as many males had high self-esteem;**grouped with oncology patients;***group x sex interaction effects non-significant;† at follow up only; a: reported as r=0.15 but described and interpreted in the paper as a negative association. It has thus been adjusted in the table to represent this.


Discussion

This review aimed to explore what is known about the status of self-esteem in

adolescents with diabetes. Fourteen studies were reviewed which reported findings on

a range of aspects of self-esteem which fell into four main categories;

1. Comparisons of global self-esteem of adolescents with diabetes and:

a) Healthy controlsb) Adolescents with other chronic diseases

2. The effect of targeted psychosocial interventions on self-esteem in adolescents

with diabetes

3. Other factors that are associated with self-esteem level in adolescents with

diabetes

The studies reviewed did not provide consistent evidence for the argument that

adolescents with diabetes suffer with lower self-esteem than their healthy peers. In

fact the majority of studies showed no significant difference between the two groups,

with available effect sizes spanning both directions.

Sociomoter theory describes self-esteem as an indicator of how much value

the individual perceives they hold for other people. It may be that asking whether

individuals with diabetes have lower self-esteem than their healthy peers is too

simplistic. If viewed on a continuum, rather than categorically, it may be that the

more severe, and thus more debilitating a disease is for an adolescent, the more likely

they are to perceive themselves as having limited value to others. Findings relating to

severity were limited and mixed, with one study finding no significant association

between severity and self-esteem (Kellerman et al., 1980) and another finding that

severity was the most significant predictor of self-esteem amongst the diabetic group


(Zashikhina & Hagglof, 2013). Further support is found for this idea, however, as the

only study to find a significantly lower self-esteem in the adolescents with diabetes, in

comparison to healthy adolescents, specifically selected participants who had been

hospitalized at least twice during the previous two years, and thus represented a group

who had current, or at least recent experience of being severely ill (Seigel et al.,

1990).

The lack of difference in self-esteem between adolescents with diabetes and

adolescents with other chronic diseases is also surprising. In particular, no difference

was found between those with cancer and those with diabetes. Again, severity within,

not across diseases may account for this as, the only effect size in the direction of the

oncology group having higher self-esteem was in Kellerman et al. (1980) (effect size

+0.21 ns) in which the illness of 63.3% of the oncology group were indicated as

“mild” in comparison to only 29.6% of the diabetic group.

It is a positive finding that despite the additional adversity that being

diagnosed with diabetes in adolescence inevitably brings, there is no evidence that

diabetes alone universally reduces an adolescent’s self-esteem to a lower level than

that of their peers. Cognitive Adaptation Theory (Taylor, 1983) proposes that

individuals going through life-threatening events experience an initial drop in self-

esteem, but are then motivated towards self-enhancement. Taylor (1983) found that,

among cancer patients, one way of doing this is through downward social

comparisons; i.e. (“Well at least I’m better off than X”). This could be one

explanation of why, in some studies, the mean self-esteem of adolescents with

diabetes was in fact higher.


It would be premature to conclude that these results show that diabetes does

not affect, or interact with adolescent’s self-esteem. It may be that in measuring the

global self-esteem of a large group of adolescents, participants with especially low or

high self-esteem in effect cancel each other out. This would certainly be supported by

the larger standard deviations reported for the diabetic groups in all but one study,

especially in comparison to other disease groups. This is also supported by Sullivan’s

(1979b) findings that suggest that those who report poor adjustment to diabetes across

a number of social contexts are more likely to experience lower global self-esteem.

This result was found within a participant population who were found to have no

significant differences in their global self-esteem in comparison to a group of healthy

adolescents (Sullivan, 1978), indicating that when measured globally, these subtle

patterns were lost.

There were mixed results for the association between gender and self-esteem,

but on the whole there was more evidence weighted on the side of females with

diabetes having generally lower self-esteem than their male counterparts. However

one study found this pattern was similar in healthy adolescents (Kellerman et al.,

1980).

There was some evidence that self-esteem deteriorates with age in adolescents

with diabetes, with the opposite trend found in an epileptic population. Perhaps a

better way to conceptualise this is in terms of duration of illness, for which there was

mixed, but slightly stronger evidence for. This goes against Taylor’s (1983) theory of

an initial drop in self- esteem followed by a subsequent rise, as it points towards a

possible gradual deterioration in self-esteem following diagnosis. This pattern lends

support to Fennel’s (1997) conceptualisation of low self-esteem as being interwoven


with negative core beliefs. It is thought that if an individual has a negative core belief

about their self-worth, any situation that is directly relevant to self-worth will be

interpreted through the lens of their core belief (Beck, 1991). This is then maintained

through a mixture of avoidance and cognitive biases, thus creating a self-perpetuating

downward spiral (Fennell, 1997). It would then logically follow that if the diagnosis

of diabetes represents a congruent event that confirms an existing negative core belief

(such as “I’m abnormal”) adolescents who had had diabetes for longer would be

further into the spiral that maintains a low self-esteem. This would fit with

longitudinal evidence that in one sample, HbA1c levels were at their highest in late

adolescence, indicating poorer diabetic control at this age (Bryden et al., 2001).

From the perspective of Sociometer theory, Jacobson’s (1984) finding about

locus of control might suggest a mediating factor between adolescents who use the

cue to low-self-esteem as a motivator to increase it, and those for whom it becomes a

self-perpetuating cycle. An internal locus of control may provide the impetus needed

to increase perceived value, whereas an external locus of control, perhaps concurrent

with core beliefs about other people holding more power than oneself, may see their

self-esteem as purely in the hands of others and the world, and therefore are unable to

independently seek out ways to improve it.

The findings for Ego Development would also support this. Jacobson et al.

(1984) highlight that later ego development stages represent a move to relying on

internal conceptualisations of the self, as opposed to external. This is likely to foster

an increased self-esteem as the individual can navigate situations based on their own

set of consistent standards, as opposed to potential varying ones from others. Ego

development stages do not correlate exactly with age, but even so, it would be


expected, based on this idea, that self-esteem would increase in later adolescence,

which contradicts with the previous discussed findings.

Sullivan (1979b) found that adolescents with diabetes that reported a better

relationship with their parents were more likely to have high self-esteem. This

supports Fennel’s (1997) conceptualisation of self-esteem, which sees the messages a

child receives from their parents as a key factor in the development of core beliefs.

However, in the absence of a comparison with healthy controls, there is nothing to

suggest that this pattern is unique to adolescents with diabetes.

The results for interventions were largely positive and showed a significant or

almost significant increase in self-esteem in three out of the four interventions

reported. It is not possible to draw firm conclusions as to the most effective style of

intervention, as only four were reviewed, and methodology varied between the

studies, but it is of note that both discussion based interventions were associated with

significant improvement. Five week follow-up of the group discussion intervention

was promising, with a further increase in self-esteem recorded compared to post test

(Colquhoun et al., 1988). Unfortunately de Wit (2010) showed a return to baseline

levels of self-esteem at one year after the end of an individual discussion intervention.

It is possible that the group format was more effective than the individual

intervention, and the fact that self-esteem scores were continuing on an upwards

trajectory at five week follow up would support this. The group intervention may have

had the added benefit of peer normalisation, which in the context of self-esteem being

socially relevant, particularly in adolescence (Rosenberg, 1965) may account for

improved gains. However, as the data is not available, it cannot be ruled out that the


participant’s self-esteem in Colquhourn et al.’s (1988) study did not return to baseline

one year later, as did de Wit et al.’s (2010).

The pattern of an initial rise, followed by a fall in self-esteem, observed in de

Wit (2010) implies either no change to self-esteem at the core belief level, or an initial

bolstering of an alternative self-schema, followed by the more negative schema

returning. The CHQ-87 questionnaire used in de Wit (2010) does report a global

measure of self-esteem but the questions themselves ask specifically about how “good

or bad” they have felt across a number of domains such as social, academic and

health. This doesn’t seem to tap into a general global sense of like or dislike of the

self in the way that RSES does, and may be confounded by actual achievement and

current mood state. It may be that following the individual discussion sessions, mood

and perceived self-competence were increased, but without continued support

fostering the opportunity to test out an alternative self-schema, whether explicit or

not, this did not result in a change at the core belief level.

A measure such as the Dysfunctional Attitude Scale (Beck & Weissman,

1978) may tap into self-esteem at the core belief level more effectively and provide a

more accurate picture of self-esteem and self-esteem change than measures such as

the CHQ-87 and CSEI which appear to overlap with self-competence.

The discussion groups appear to be more effective than camp based programs.

It may be that through discussion of diabetes related insecurities, cognitive biases are

naturally challenged, especially in the context of a group of adolescents with the same

condition. Camp based programs, may provide active opportunities for “evidence

against” negative automatic thoughts. However according Fennell’s (1997) model, in


people with low self-esteem, cognitive biases may prevent disconfirmation of

negative beliefs if they are not explicitly discussed.

Limitations

As highlighted earlier, self-esteem is not a universally defined concept. The

RSES most accurately captures Rosenberg’s (1965) conceptualisation of self- esteem

being a global measure of self-liking. However other measures such as the Piers

Harris Self-Concept Scale also claim to measure self-esteem, but do so in a way that

blurs overall liking and acceptance of the self with a cognitive evaluation of

competence across domains. As such, only measures stating they were specifically

measuring global self-esteem were included. This has inevitably limited the breadth of

papers included and potentially missed relevant findings that captured some element

of self-esteem. There was also not a clear cut-off between two distinct categories of

measures and included measures such as the CSEI and CHQ subscale did touch on

aspects of self-concept, but were included based on their stated remit and inclusion of

a global self-esteem scale.

The review also focussed explicitly on adolescents and papers including the

results of children under 11 or adults over 19 were excluded. This may have resulted

in a longitudinal picture of the course of self-esteem from childhood to adolescence

being missed, however as most studies did not separate into age categories, it was

thought that broad age ranges may mask significant findings.


Implications for practice and research

The results of this review suggest that low self-esteem may not be a universal

problem amongst adolescents with diabetes, however this must be tempered by the

limited evidence base and varying concepts of self-esteem. This still indicates a

hopeful position for recently diagnosed adolescents; diabetes does not necessarily

have a negative impact on self-esteem. The finding that brief discussion based

interventions could also provide at least a temporary raise in self-esteem is also

encouraging, and may reflect the kinds of conversations that many health

professionals are already having with their clients.

Although the reviewed studies compared self-esteem of adolescents with

diabetes to self-esteem of adolescents with a variety of other chronic conditions, and

those with none, none specifically looked at the population for whom low self-esteem

is most significant; those with diagnosed depression. Strong associations have been

found between depression and self-esteem in general populations (Watson, 2002) and

self-esteem has been shown to predict negative affect (Lightsey, 2006). Additionally,

Sullivan (1979b) found strong correlations between adolescent girls with diabetes

scores on the BDI and their scores on the RSES. However these girls were not chosen

on the basis of a diagnosis of depression, and many may have simply represented non-

clinical fluctuations in mood. By measuring the self-esteem, and other demographic

and psychological variables, of a group of adolescents with diabetes and concurrent

depression, along with a group of adolescents with diabetes and no depression, a more

consistent pattern of predictor variables may become apparent.

The same would useful in terms of severity, perhaps measured by Hba1c

levels. There was some evidence that pointed to an association of lower self-esteem


with increased severity of illness, but this effect would be better tested by specifically

selecting participants who represented a broad range of severities and subsequent

impact on their quality of life.

Kellerman et al.’s (1980) finding that a stronger internal locus of control was

related to lower anxiety and higher self-esteem provides a potential focus for

intervention. Diabetes requires close monitoring and adjustment of glucose levels, and

it may be that those who perceive they have a greater level of control over their

diabetes experience less anxiety and a subsequent more positive self-esteem,

compared to those who have either poor control, or perceive their efforts at control as

futile. A potential focus for intervention would be on supporting an adolescent to

improve their internal locus of control, perhaps by offering more flexible treatment

options and encouraging them to take ownership of the management of their diabetes.

However other research has shown, in a population of children and adolescents (aged

10-17), a higher external locus of control is associated with healthier hba1c levels

(Evans & Hughes, 1987) and healthier hba1c levels are in turn associated with a rigid,

more controlling family structure. This suggests that navigating the age at which an

adolescent takes control of their insulin management involves a delicate balance

between potentially enhancing self-esteem and independence, and risking a

destabilisation of hba1c levels. Skinner suggest negotiating this transition with the

adolescent in an individual basis, and as Kellermen et al.’s (1980) findings were from

a group of adolescents with mean ages between 15 and 16, and the mean age in Evans

and Hughes, (1987) study was 13, there is tentative evidence that mid-adolescence is

a good time for this, in terms of self-esteem enhancement. Further research is

necessary to confirm this hypothesis.


It also may be that self-esteem is too broad and multifaceted a concept to

capture useful information on. Conceptualising self-esteem as a core belief, and thus

using a measure such as the Dysfunctional Attitude Scale would allow a more

specific, individualised picture of the adolescent’s views about themselves, and thus a

clearer focus for subsequent Psychological treatment, and a clearer measure of

change.

It may also be that self-esteem in its current conceptualisation is not a

significant mediating factor between the diagnosis of diabetes and the onset of

depression. Despite strong correlations between self-esteem and depression, Sullivan

(1979b) still found a stronger link directly between depression and diabetes

adjustment. Furthermore, global self-esteem may be too blunt a measure to capture

meaningful differences. Drawing on Becks cognitive model, an existing negative core

belief about the self may become activated in the context of a diagnosis of diabetes if

the adolescent views it as a personal failing or defect. This may become particularly

exacerbated in patients with complex diabetes that involves a high level of adjustment

of lifestyle and diet. In this context, measuring “shame-proneness” may capture the

likelihood of that adolescent going on to conceptualise their diabetes as something

shameful, representing a personal failing, thus translating to a negative view of the

self.


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Appendix A

Instructions for Authors- Health Psychology

ManuscriptsThe manuscript title should be accurate, fully explanatory, and no longer than 12 words. The

title should reflect the content and population studied. If the paper reports a randomized clinical trial, this should be indicated in the title. The title of brief reports should start with the words "Brief Report".

The title page should include the names of all authors and their affiliations at the time the research was done. This information will be masked to ensure a blind peer review process by the editorial office. Authors should make sure that all other identifying information in the text of the paper is masked/removed prior to submission.

All manuscripts must include a structured abstract containing a maximum of 250 words with the following sections:

Objective (brief statement of the purpose of the study); Methods (summary of the participants, design, measures, procedure); Results (primary findings); and Conclusions (specific statement of the implications of the data).

Please supply up to five keywords or brief phrases after the abstract. The Introduction should not exceed 3–4 pages in length. The paper should be referenced appropriately but excessive citations should be avoided.

All research involving human participants must describe oversight of the research process by the relevant Institutional Review Boards and should describe consent and assent procedures briefly in the Methods section.

All statistical tests should include effect size whenever possible.First person language ("I", "we") should be avoided. Terminology should be sensitive to the

individual who has a disease or disability. The journal endorses the concept of "people first, not their disability." Terminology should reflect the "person with a disability" (e.g., children with diabetes, persons with HIV infection, families of people with cancer) rather than the condition as an adjective (e.g., diabetic children, HIV patients, cancer families). Nonsexist language should be used.

It is important to highlight the significance and novel contribution of the work. The translation of research into practice must be evidenced in all manuscripts. Authors should incorporate a meaningful discussion of the clinical and/or policy implications of their work throughout the manuscript, rather than simply providing a separate section for this material.

Health Psychology publishes a broad array of types of papers. Authors of qualitative and measure


development papers should read the guidelines for these types of papers, noted below.

Reference

American Psychological Association (2014). Health Psychology: Instructions for

Authors: Manuscripts. Retrieved 08/06 2014. Retrieved from:

http://www.apa.org/pubs/journals/hea/.


Summary of Clinical Experience

Year 1

Adult Community Eating Disorder Service- November 2013- September 2014 (1.5

days p/w for 1st 6 months, then 2.5 days p/w).

This role involved assessment, formulation and collaborative treatment with adults

presenting with diagnosed eating disorders. The main model used was Fairburn's

Transdiagnostic CBT model for eating disorders, and I also used aspects of DBT.

As part of this placement I delivered a presentation for staff on diabetes and eating

disorders, and developed an adapted version of Fairburn's model to incorporate the additional

patterns and risks that can arise for those with diabetes

Adult Rehabilitation Ward – November 2013 – March 2014 (1 day p/w)

The placement gave me the opportunity to work as part of a ward MDT to support the

rehabilitation of adults moving out of acute mental health units. It involved taking a holistic

approach to consider preparing the clients for independent living and joint working with other

MDT professionals.

Year 2

Older Adult Community Mental Health Team and Memory Clinic – March 2015 –

October 2015

This placement involved working with individuals facing complex health problems,

dementia, and end of life issues. I completed two full dementia assessments and two extended

screenings. I jointly ran a 12 week CBT group with my Supervisor. I completed consultations

to carers (both paid and family members) and presented a teaching session on strengths and

values based approaches to working with older adults.


Child and Adolescent Mental Health Service - September 2014 – March 2015

I worked with young people aged 6-17 on difficulties such as bullying, food phobia,

ASD, OCD and anger as well as cognitive assessments. I developed my skills in integrating

systemic factors into my formulations, and managing the often competing goals of those

surrounding the young person. Liaison and consultation with local schools was vital in some

cases to support children to continue to attend and seek support from teachers when needed.

I mostly used a Narrative therapy approach, and enjoyed the flexibility that this

approach allows in creatively incorporating a young person's strengths and interests into the

treatment. I also developed and ran a group for teenagers experiencing tics.

Year 3

Community Team for People with Learning Disabilities - October 2015- March

2016

This involved working with adults at all levels of learning disabilities providing

therapy, cognitive assessment and consultation to supported living placements for clients with

behavior that challenges. The consultation work taught me the importance of appreciating

staffs limited time, and adapting complex formulation into simple steps that they could take.

Paediatric Psychology Team – General Hospital setting- March 2016- September

2016

This placement involved a mixture of outpatient and inpatient work within the

Paediatric Psychology Team at a busy General Hospital. My work included outpatient

therapeutic work with children of a variety of ages with conditions including Chronic Fatigue,

Cerebral Palsy, Obesity and Diabetes. Much of this work included linking in with schools,

social services and other professional groups within the hospital. I also worked with several


parents whose young children were admitted to PICU- consisting of initial supportive meetings

and basic psychological first aide. I completed one general and one complex

neuropsychological assessment under the supervision of a Neuropsychologist. Lastly I

developed and co-ran a workshop for Parents of children with Enuresis.


PSYCHD CLINICAL PROGAMMETABLE OF ASSESSMENTS COMPLETED DURING TRAINING

Year I AssessmentsASSESSMENT TITLE

WAIS-IV Short report of WAIS-IV data and practice administration

Service-Related Project Adult Eating Disorders NICE Guidelines Service Evaluation Phase two: The Content and Usability of Care Plans.

Practice Case Report A Case report of the assessment process with a female presenting with Anorexia Nervosa and Obsessive Compulsive Symptoms

Problem Based Learning – Reflective Account

Problem Based Learning Reflective Account: The Relationship to Change

Major Research Project Literature Review

Self-esteem in adolescents with diabetes:A review

Adult – Case Report 1 A case report of an intervention with a young adult presenting with Anorexia Nervosa and Low Self-Esteem.

Adult – Case Report 2 A case report of a Neuropsychology assessment with a young man with Psychosis

Major Research Project Proposal

An exploration of shame in young adults with Diabetes, and its relationship with depression and treatment adherence.

Year II AssessmentsASSESSMENT TITLE

Professional Issues Essay

In relation to yourself critically explore the statement that clinical psychologists should “move away from psychiatric diagnoses…., which have significant conceptual and empirical limitations, and develop alternative approaches which recognise the centrality of the complex range of life experiences…” (Time for a Paradigm Shift, BPS, 2013).

Problem Based Learning – Reflective Account

Reflective Account 2 – The Stride Family

Child and Family – Case Report

An Integrative case report about a 14-year old girl presenting with OCD and family tensions. It draws mostly on Narrative and CBT ideas, and aims to integrate these along with other relevant theories.


Personal and Professional Learning Discussion Groups – Process Account

PPLDG Process Account

Older People – Oral Presentation of Clinical Activity

Using and integrating strengths and values based models with clients and teams

Year III Assessments ASSESSMENT TITLE

Major Research Project Empirical Paper

Shame, depression and self-care in emerging adults with type 1 diabetes

Personal and Professional Learning – Final Reflective Account

On becoming a clinical psychologist: A retrospective, developmental, reflective account of the experience of training

Case report 5 - People with Learning Disabilities

An integrative exploratory case report of a woman in her 20's with a learning disability and complex trauma history.

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