The experience of a psychoeducational course for carers of ... · NHS Foundation Trust . ......

The experience of a psychoeducational course for carers of people with

“personality difficulties”

Sarah Atkinson

Commissioned by Dr Ruth Sutherland, Principal Clinical Psychologist, Pathway Development

Service & Leeds Personality Disorder Managed Clinical Network, Leeds and York Partnership

NHS Foundation Trust

Service Evaluation Project Carers Experience of a Psychoeducational Group

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Table of Contents

1. Background ............................................................................................................................ 4

1.1 Literature Review ............................................................................................................. 4

1.1.1 Defining “personality difficulties” ....................................................................... 4

1.1.2 Supporting carers of people with personality difficulties ................................... 4

1.1.3 Psychoeducational groups for carers of people with personality difficulties ..... 5

1.2 Commissioning and Project Aims .................................................................................... 6

1.2.1 The service .......................................................................................................... 6

1.2.2 Aims .................................................................................................................... 7

2. Methodology ......................................................................................................................... 8

2.1 Design and Recruitment .................................................................................................. 8

2.2 Data Collection ................................................................................................................. 8

2.3 Data Analysis .................................................................................................................... 9

2.4 Ethical Considerations ...................................................................................................... 9

2.4.1 Consent. .............................................................................................................. 9

2.4.2 Confidentiality. .................................................................................................. 10

2.4.3 Sensitive material. ............................................................................................ 10

2.5 Credibility Check ............................................................................................................ 10

2.6 My Perspective ............................................................................................................... 10

3. Results .................................................................................................................................. 11

3.1 Results 1: Needs of Carers of People with “Personality Difficulties” ............................ 11

3.2 Results 2: Participant Experiences of the Cygnus Course .............................................. 12

3.2.1 Positive experiences of participating in the Cygnus course. ............................. 12

3.2.2 Challenging experiences of participating in the Cygnus course. ...................... 13

3.2.3 Experiences of carer consultants co-facilitating the Cygnus course. ................ 15

3.3 Results 3: Improving Services for Carers of People with “Personality Difficulties” ...... 16

4. Discussion ............................................................................................................................ 17

4.1 Strengths and Limitations .............................................................................................. 18

4.2 Conclusion and Recommendations ............................................................................... 19

5. Dissemination of Findings ................................................................................................... 19

6. References ........................................................................................................................... 21


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7. Appendices .......................................................................................................................... 23

7.1 Appendix 1 – Topic Guide .............................................................................................. 23

7.2 Appendix 2 – Consent Form ........................................................................................... 24

7.3 Appendix 3 – Participant Information Sheet ................................................................. 25

7.4 Appendix 4 – Needs of Carers Illustrative Quotations ................................................... 28

7.5 Appendix 5 – Positive Experiences of Participating in the Cygnus Course Illustrative

Quotations ........................................................................................................................... 30

7.6 Appendix 6 - Challenging Experiences of Participating in the Cygnus Course Illustrative

Quotations ........................................................................................................................... 35

7.7 Appendix 7 – Improving Services for Carers Illustrative Quotations ............................. 39

7.8 Appendix 8 – Poster ....................................................................................................... 42


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1. Background

1.1 Literature Review

1.1.1 Defining “personality difficulties”. Individuals who experience “significant and

persistent distress and functional impairments in personal, family, social, educational,

occupational domains” (World Health Organisation, 2018, cited by Lamont & Dickens, 2019,

p. 1) can fall into the diagnostic criteria for personality disorder (Personality Disorder

Consensus Group, PDCG, 2018). Borderline Personality Disorder (BPD) is one of the most

frequently explored diagnoses within the literature (Bateman, Gunderson, & Mulder, 2015).

“BPD is characterised as experiencing great interpersonal difficulties and trouble managing

emotions, making it difficult for individuals to sustain relationships.” (Dunne & Rogers, 2013,

p. 643).

Diagnostic criteria can be used to allocate resources within the healthcare system

(PDCG, 2018). However, the label of “personality disorder”, particularly BPD, can be

stigmatizing and is a controversial topic (Lamont & Dickens, 2019; PDCG, 2018). There is

support for the diagnosis to be “rethought, in a way that acknowledges complexity, nuance,

and context” (The Lancet Psychiatry, 2019, pg. 187).

Further exploration of the diagnostic controversy is beyond the scope of discussion

within this report. However, due to this controversy around the label of “personality

disorder” and the current lack of alternative option, the term “personality difficulties” will

be used throughout this report. This will refer to individuals who either have a diagnosis, or

present with difficulties which may be consistent with a diagnosis of, “personality disorder”;

in particular BPD.

1.1.2 Supporting carers of people with personality difficulties. Within this context,

carers can be defined as family, friends or supporters of individuals. Despite limited research

specifically exploring the needs of carers of people with personality difficulties, there is a

clear impact upon both the individuals experiencing personality difficulties, as well as those

around them, including carers (Lawn & McMahon, 2015). High levels of carer burden have

been identified in carers of people with personality difficulties (Bailey & Grenyer, 2014;

Grenyer et al., 2019; Lamont & Dickens, 2019). This is linked to the psychological, practical

and financial impact of caring (Ohaeri, 2003, cited by Sutherland, Baker & Prince, in press).


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In a focus group study by Dunne and Rogers (2013), carers identified the need for

being offered further information and understanding around the diagnosis of “personality

disorder”, with many reportedly having to research the diagnosis for themselves. Carers

requested further support surrounding carer’s assessments and accessing financial support.

A further sub-theme focused on self-care within the caring role, including the option of

respite. Further support was identified as a need, and in particular, the need for personality

difficulties specific carer support groups. This also involved carers feeling as though they had

someone to turn to for advice.

Despite these needs, it is suggested that carers of individuals with personality

difficulties are often overlooked within the healthcare system; highlighting scope for further

intervention and support (Bailey & Grenyer, 2014; Dunne & Rogers, 2013). Considering ways

of improving services for people with personality difficulties included offering more training

and education for both health professionals and carers (Fanaian, Lewis, & Grenyer, 2013).

This is in view of health professionals improving their skills and attitudes when working with

carers of individuals with personality difficulties, offering specialist support and avoiding

further exclusion and discrimination (Lawn & McMahon, 2015).

1.1.3 Psychoeducational groups for carers of people with personality difficulties.

One way of supporting carers is to offer psychoeducational groups. As part of a service

evaluation project, Chiocchi, Lamph, Slevin, Fisher-Smith, and Sampson (2019) found that

psychometric scores following a peer-led carer psychoeducational programme indicated

improved well-being, reduced burden, and increased family empowerment. Although this

project involved carers of both people with personality difficulties as well as those with

range of other mental health diagnosis, and did not separate out the results, the results

remain of interest, but are not definitive.

Furthermore, although designed for carers of young people with BPD features,

Pearce et al. (2017) evaluated a three session manualised psychoeducational group.

Following the intervention, although objective burden and distress remained unchanged,

participants reported a significantly improved subjective sense of burden, and improved

knowledge of personality difficulties.

In a randomised control trial, Grenyer et al. (2019) explored the impact of a

psychoeducational group for carers of people with BPD, compared with those on a waiting


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list. The group focused on improving relationship patterns, psychoeducation about BPD,

peer support, self-care and skills to reduce burden. After 10 weeks, carers who had received

the intervention reported improved relationships, sense of empowerment, and emotional

expression. These results were sustained after 12 months, indicating effective and longer

term benefits of offering a psychoeducational group to carers of people with personality

difficulties.

Despite some positive results, there remains very little research into

psychoeducational groups specifically for carers of people with personality difficulties.

Research is particularly lacking within the UK, with most current research around

personality difficulties being carried out in the USA and Australia. Further research is

therefore recommended.

1.2 Commissioning and Project Aims

1.2.1 The service. Leeds Personality Disorder Managed Clinical Network (PDMCN)

have developed a six week psychoeducational course, known as Cygnus. The name of the

course was developed within the Carers Involvement Group. The Cygnus course is offered to

family, friends and supporters of those who may have a diagnosis of, or present with

difficulties consistent with a diagnosis of, “personality disorder”. It explores the meaning of

the term “personality disorder”, ways of offering support to someone who experiences

personality difficulties, and self-care as an essential part of caring.

Each course is facilitated by one healthcare professional (e.g. clinical psychologist,

care coordinator, senior mental health practitioner) and a carer consultant. Carer

consultants have personal experience of the caring role and have previously completed the

Cygnus course as participants.

The Cygnus course has been run three times per financial year and has been held at

different times and locations to improve accessibility. Eight Cygnus courses have been

facilitated since 2016, with a total of 41 participants completing the course. An additional 7

participants dropped out after beginning the course. On average, there have been 6

participants within each course.

Course outcomes from routine service evaluation suggest that participants (n=36)

are very satisfied with the course, that they gain significant benefit in developing their


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knowledge and skills regarding personality difficulties, and that their individual personal

wellbeing is improved. See Figure 1 for further details regarding outcomes. However, given

the relatively small number of attendants, it is difficult to draw generalizable conclusions

from these questionnaires alone.

Figure 1. Cygnus course outcomes taken from the Leeds Personality Disorder

Network Carers Group 2016-2019: Evaluation Report (Dr Ruth Sutherland, October 2019).

1.2.2 Aims. This service evaluation project (SEP) was commissioned by Dr Ruth

Sutherland. It will use qualitative methodology to evaluate and gain more in depth

information about the experiences of Cygnus course participants in order to further improve

and develop the services offered to carers.

The following areas will be explored:

1) The needs of carers of people with personality difficulties.

2) Carer experiences of the Cygnus course, including helpful and challenging aspects.

3) How the support offered to carers may be improved.

Personality Disorder: Knowledge and Skills Questionnaire (PD-KASQ, Bolton et al, 2010), adapted for Carers: T-test indicates a statistically significant change in scores (p<0.001) indicating improved knowledge and understanding of personality disorder and that the carers are feeling more skilled in supporting the person for whom they care.

Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS): T-test indicates a statistically significant change in scores (p=0.004) indicating improved personal wellbeing.

Carer Satisfaction Questionnaire (Larsen et al., 1979, adapted): Satisfaction ratings for the group were high, with the majority of responses falling into the ‘very satisfied’ or ‘mostly satisfied’ categories, with no responses falling into the ‘unsatisfied’ category. Brief thematic analysis of open responses in the questionnaire identified some key themes:

What was helpful about the group?

Opportunity to share experiences with other carers

Feeling validated and hopeful

Opportunity to learn about personality disorder

Facilitators perceived as interested, helpful, professional, knowledgeable and experienced

What could be better?

More time to discuss topics and issues in-depth

More opportunities for discussions in pairs/small groups

The group should lead on to further ongoing support

A need for balance between specific topics and more ‘open space’ for support


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2. Methodology

2.1 Design and Recruitment

In order to gain in-depth information about the experiences of participants, a

qualitative design was implemented (Tracy, 2019). A semi-structured interview approach

was used, flexibly following the topic guide predominantly developed by the commissioner,

as shown in Appendix 1. All data was collected face-to-face. Although telephone interviews

may have been time efficient, face-to-face interviewing can be beneficial in gathering

detailed answers and clarifying ambiguous answers (Lavrakas, 2008).

Initially, a focus group was the chosen method to collect the data due to time

constraints and the value of discussions during group interactions (Tracy, 2019). Two

individual interviews were also arranged for participants who have a dual role of being a

carer consultant. As a question within the topic guide related to asking participants about

their experience of having a carer consultant co-facilitating the course, it would not be

appropriate to have these participants within the focus group.

One focus group was facilitated, however only two participants attended. Two

further individual interviews were then offered to participants who had expressed an

interest in participating in the project, but were unable to attend the focus group. In total,

the project recruited six participants.

Participants were recruited from individuals who had previously completed the

Cygnus course and had given consent to be contacted for research purposes (n=41). The

project aimed to recruit between six and eight participants, as recommended for focus

groups (Ryan, Gandha, Culbertson, & Carlson, 2014). The project flyer and information sheet

(Appendix 2) were emailed out to all potential participants by the project commissioner, Dr

Ruth Sutherland. Interested participants informed either the project commissioner or the

project researcher, via email or telephone. The project researcher facilitated the individual

interviews, and an assistant psychologist from Leeds PDMCN co-facilitated the focus group.

2.2 Data Collection

All data was collected between March-July 2019. The focus group lasted

approximately 90 minutes, and each of the interviews approximately 30 minutes.


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Participants signed the consent form (Appendix 3) before beginning. The focus group took

place at Carers Leeds, and the interviews took place at LYPFT premises. The focus group and

interviews were audio-recorded. Each participant received a £10 high street voucher.

2.3 Data Analysis

The focus group and interviews were audio-recorded and transcribed verbatim.

Thematic analysis was used to analyse all of the data and to explore themes within the data

set. Thematic analysis is “a way of identifying what is common to the way a topic is talked

about and making sense of those commonalities” (Braun, Clarke, Hayfield, & Terry, 2019, p.

57) in relation to specific research questions. Although an inductive, bottom-up approach

was used, meaning that the themes were derived from the content of the data, themes

were also considered in relation to understandings gained from other research exploring

support for carers of people with personality difficulties. Figure 2. outlines the steps of

thematic analysis (Braun & Clarke, 2006).

Figure 2. Braun & Clarke’s (2006) six-phase framework for doing a thematic analysis.

Due to the relatively small sample size, demographic information will not be

included in the evaluation to maximise anonymity of participants.

2.4 Ethical Considerations

Ethical approval for this project was sought from the University of Leeds School of

Medicine and Health Ethics Committee and was granted on the 7th of January 2019.

Amended ethical approval, to include individual interviews, was granted on 29th April 2019.

The SEP was also approved by the Leeds & York Partnership NHS Foundation Trust R&D

Department. The following potential ethical issues were considered.

2.4.1 Consent. Participants were emailed the participant information sheet to

ensure that they were able to give informed consent to take part in the study. Participants’


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verbal consent was initially obtained and a signed copy of the consent form was obtained at

the start of the focus group/ interview. Participants were made aware of their right to

withdraw at any stage, prior to transcription of the data.

2.4.2 Confidentiality. Participants were asked to provide their name and email

address so that they could be contacted by the researcher. These were stored on a

password protected Microsoft Excel file, accessible only by the researcher. Audio recordings

of the focus group and interviews were stored on an encrypted Dictaphone, and were

deleted once they had been transcribed. Interview transcripts were identified only by a

participant number. All documents were stored on the secure M: drive, on the University of

Leeds network. All data was anonymised within the report.

2.4.3 Sensitive material. Although the SEP was mainly focused on participants’

experiences of attending the Cygnus course, some of the questions also explored the needs

of carers. It is possible that this could evoke an emotional response, particularly in relation

to carer burden. Participants were aware that they could contact a member of the PDMCN

to share any difficulties which may have been raised.

2.5 Credibility Check

The themes were discussed with Dr Ruth Sutherland (project commissioner) in order

to check the quality of the analysis, and ensure the themes were mutually agreed upon.

2.6 My Perspective

Within qualitative research it is important for the researcher to consider their personal

stance in relation to the topic and remain aware of potential biases during analysis (Tracy,

2019). I chose this SEP as I have an interest in the topic and clinical area. I have previously

worked as an assistant psychologist within a “personality disorder” service. Although I did

not work directly with carers, I was aware of the stigma associated with the diagnosis of

“personality disorder”, and the lack of support and services offered to carers at that time

and locality. I have no personal experience of caring for someone with personality

difficulties. With this in mind, I feel my personal stance is unlikely to have biased results, but

it remains important to acknowledge.


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3. Results

For each of the three results sections, the major themes are summarised below.

Within results section 2, subthemes are emboldened and underlined. Anonymised extracts

from the raw data are used for illustration. Further illustrative quotations can be found in

appendices 4-7.

3.1 Results 1: Needs of Carers of People with “Personality Difficulties”

Increasing understanding. There seemed to be a theme around a desire to

understand more about personality difficulties, for example, the traits associated with a

diagnosis of “personality disorder”.

“It’s very hard as a lay person to understand what behaviours are linked to personality

disorder, and what are just the behaviours of your loved one anyway.” (Participant 6)

Learning more effective ways of managing/ supporting. Participants described a

desire to learn more effective ways of managing during difficult situations with, and feeling

better able to support the person they are caring for.

“You are trapped in this environment with your own situation… you don’t know any

strategies other than what you’re doing. And you know what you’re doing is not working. So

it’s a downward spiral all the time, so you’re getting yourself into a complete mess all the

time.” (Participant 2)

Opportunities to share personal experiences. Participants described how they

would like more opportunities to be able to share their personal experiences with others’

who are non-judgemental and understanding.

“You just need someone to let it out to… just to have someone who goes ‘yeah, I get it’,

without any explanations or any detail about the whole thing… just someone who

understands.” (Participant 3)

Support navigation. Participants described how difficult it can be to find suitable

support, and the need for someone to help guide them to available options.


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“You can spend hours on the internet, finding lots of different support places that aren’t

really for you. You need something a little more bespoke… You need somebody to point you

in the right direction.” (Participant 2)

3.2 Results 2: Participant Experiences of the Cygnus Course

3.2.1 Positive experiences of participating in the Cygnus course. As shown in Figure

3, the analysis resulted in three major themes and eight subthemes.

Figure 3. Themes and subthemes demonstrating positive experiences of attending the Cygnus course.

Learning. There was a major theme of learning. Participants described a positive

experience of the Cygnus course delivery. This included both the structure and content of

sessions.

“I think the educational side of it is really useful… I liked the structure of the group

and how it progressed.” (Participant 1)

Participants described a positive experience of learning new strategies and ways to

manage with difficult situations at home.

“There are strategies that we put in place now, that I’ve learned from being on that

course, that I would never have known had I not been on it.” (Participant 2)

Participants described an increased understanding of personality difficulties, and

associated traits.

“Everything makes a lot more sense.” (Participant 1)


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Participants were connected or related to the person they cared for in a variety of

ways. Being able to share and listen to different perspectives was described as being a

positive experience from the Cygnus course.

“There were partners, children and parents of people with personality disorder… it

was very different perspectives… I can learn something.” (Participant 1)

Connectedness. Participants described a sense of connectedness from attending the

Cygnus course. This was in part due to sharing experiences with others.

“We all thought ‘oh yeah that’s happened to me’.” (Participant 6)

Participants also described feeling well supported, both by course facilitators and

other participants within the course.

“It kind of felt a bit like a warm blanket.” (Participant 3)

Personal Benefits. Participants described gaining a range of personal benefits from

completing the Cygnus course. There was a shared sense of it being a worthwhile

experience.

“I am completely sold on it really… I’ve got nothing but praise for it.” (Participant 2)

Participants were pleased that the course had offered them the opportunity for

further support, particularly in relation to the bi-monthly Andromeda carers support group.

“It has made a difference because I now go to the carers [support] group… I wouldn’t

have known about the carers group, so it opened up a new avenue for me… it’s given

me a support network.” (Participant 2)

3.2.2 Challenging experiences of participating in the Cygnus course. As shown in

Figure 4, the analysis resulted in two major themes and six subthemes.


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Figure 4. Themes and subthemes demonstrating challenging experiences of attending the Cygnus course.

Emotional impact. Participants described feeling surprised by the emotional impact

of the Cygnus course, particularly during the initial sessions. Both the content and process

were described as being emotionally evoking.

“I think talking about your personal situation is emotional, it’s never easy. It can be a

bit overwhelming.” (Participant 6)

The ending of the course was an emotionally challenging experience, particularly in

relation to the group identity also coming to an end, and participants wanting the course

and supportive environment to continue for longer.

“There is a feeling of being a tad bereft. And curiosity of how others have gone on,

because people have poured out their stories, and you kind of what to know ‘well

what happened next?’ (Participant 4)

Some participants described experiencing difficult realisations during their time on

the course. For example, the realisation that some of the difficulties they encounter when

caring for someone with personality difficulties may be life-long or difficult to change, as

well as some participants beginning to notice behaviours which are sometimes labelled as

personality difficulties in other family members.

“It’s still an ongoing concern… it was a realisation ‘crikey, we’re going to have to deal

with this forever’.” (Participant 6)


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Practicalities. Practicalities of the course could present a challenge. Some

participants struggled with the educational content of the sessions, as well as the amount of

handouts which were offered within each session.

“We had handouts, although I found them a bit daunting.” (Participant 4)

Getting the right balance between planned session content and flexibly allowing

group discussions could be challenging, potentially leading to the ending of the sessions

feeling rushed.

“At times it felt like we got discussing something, and then we had to go through the

last bits very quickly.” (Participant 6)

Some participants experienced personal challenges whilst attending the course. For

example, preferences of venue, managing caring responsibilities whilst making time for the

course, and managing other responsibilities such as work shifts.

“If it had been nearer to home, but you can’t have everything. It was in the winter when I

went so it was a bit dark, and it was in not the nicest end of town… I did feel a bit vulnerable

getting there… I didn’t particularly like the venue.” (Participant 2)

3.2.3 Experiences of carer consultants co-facilitating the Cygnus course. Two of the

participants were also carer consultants who had co-facilitated the course. Within this

section, participant numbers have not been identified for illustrative quotations to maintain

anonymity.

One of the participants described their experience of this as positive, allowing them

to consolidate their own learning and hear about alternative perspectives.

“It’s helpful again ‘cos it’s more perspectives and more thoughts, and the more you

hear from it, the more you learn yourself.”

The other participant had mixed views. After an initial positive experience, they also

described reservations about what they could offer as a co-facilitator. Both participants

described feeling well supported within their roles.

“I’m not as sure about what I’ve got to offer… I don’t know what I’m bringing to the table to

be quite honest… I do feel well supported.”


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The other participants commented on their experience of being a participant on the

course whilst a carer consultant was co-facilitating. Overall, this was described as a positive

experience, complementing the professional stance. However, it could be difficult to hear

realisations of ongoing difficulties within the caring role, including following participation in

the Cygnus course.

“Knowing that it wasn’t just someone whose book learned it… Having someone who

actually lives through it, as well as knowing what goes on, yeah that definitely made

it better.”

3.3 Results 3: Improving Services for Carers of People with “Personality Difficulties”

A total of four themes were identified from the analysis in relation to how services

for carers of people with “personality difficulties” could be improved.

Further support. Participants suggested that continued support following the course

could be beneficial. Although they were aware of the Andromeda peer-support group, there

was a sense of also wanting something different to this. For example, having the

opportunity to speak to a course facilitator to plan for the future, and to consolidate

learning with other course participants.

“After the group there’s the Carers Leeds thing, and if that was a bit more frequent, that

would be great… Something like where we can go to Carers Leeds, but it be back being the

group you were with. Or not necessarily just the group you were with, but other people

who’d been on the course. A chance to maybe talk about, from what you’d learned, what

you’d done.” (Participant 3)

Availability/ access to support. Participants described how earlier and easier access

to support would be beneficial.

“Whenever the young person or whoever gets their diagnosis, they [carers] should be told

about this course and support group, because they’re the ones who need it… It was like you

needed to know what you needed… And I didn’t know what I needed. I just knew I needed

help.” (Participant 4)


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Flexible options of support. Perhaps offering an alternative option of accessing

support would be helpful, particularly for participants who find the group environment too

challenging.

“I don’t know how you get across to the people who can’t open up very well…. I think should

there be something for those people other than the 6 week course… Is there some sort of

help available that doesn’t require a person whose uncomfortable in that situation.”

(Participant 2)

Preparation for the Cygnus course. Offering more in-depth preparation for the

course may be helpful, either by providing more paperwork, or offering a chance to chat

with a course facilitator beforehand.

“Maybe if, when you got the information about it [the Cygnus course], it just gave you, you

know, ‘we’re not going to give you ways to make sure it never happens, but we are going to

help you understand’. Just that little bit of an explanation of what you’re going into. That

might help people have a little bit of an expectation of what it’s going to be. Rather than just

going in blind and then it not being what you were hoping for.” (Participant 3)

4. Discussion

The results support the quantitative outcomes gathered during the Cygnus course

evaluation prior to the current SEP. This suggests that participants found the Cygnus course

beneficial and developed their knowledge and understanding of personality difficulties as a

result of attending the course.

The themes for the needs of carers of people with personality difficulties appeared

to involve participants wanting to increase their understanding of personality difficulties,

learn more effective ways of managing during difficult situations and feeling better able to

support the person experiencing personality difficulties, wanting opportunities to share

personal experiences with non-judgmental and understanding people, and finding it difficult

to find suitable support, with the desire for someone to help guide them in the right

direction. These findings fit with the carers needs identified in previous research (e.g. Dunne

& Rogers, 2013; Fanaian et al., 2013), perhaps suggesting that carers needs are remaining

unmet.


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Regarding experiences of attending the Cygnus course, the main positive themes

seemed to be around an increased sense of learning more about personality difficulties,

feeling more connected to others, and having the opportunity to develop a wider support

network following the course. These findings suggest that the Cygnus course is perhaps an

opportunity for carers to get their needs met. Although not directly measured, hopefully the

experience of the course may positively impact upon carer burden (Grenyer et al., 2019).

The emotional impact of the course was a challenge for all participants who took

part in the evaluation, to varying extents. Managing when the course comes to an end was a

particularly common theme. There were also individual challenges regarding preferences for

the amount of hand-outs provided, getting the right balance between group discussions and

course content, and difficulties with accessing the course due to personal circumstances. To

reduce the impact of these challenging experiences, the themes will be considered in future

recommendations.

Regarding how the services for carers of people with personality difficulties may be

improved, participants identified themes around having opportunities for further support

after the Cygnus course to help consolidate learning and maintain connections; having

earlier and easier access to support, perhaps around the time of diagnosis (if applicable);

having flexible options of support, particularly for individuals who struggle with the group

environment; and offering more in-depth preparation for the Cygnus course in terms of the

academic content and potential emotional impact. Again, these themes will be considered

within future recommendations.

4.1 Strengths and Limitations

Difficulties with recruitment led to a combination of individual interviews and a small

focus group, rather than one focus group as originally planned. Although only using one

method would have been beneficial, also having data from individual interviews decreased

the possibility of social desirability bias.

A total of six participants took part in the study which is acceptable for qualitative

research (Tracy, 2019). However, an increased number of participants would have allowed

for the data to be more representative and reliable. The impact of selection bias should also

be considered. Perhaps those who volunteered to participate were more motivated to

provide feedback on their experiences of the course, affecting generalisability of results.


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Perhaps a method utilising anonymous feedback may have attracted more participants and

reduced the impact of potential biases.

4.2 Conclusion and Recommendations

In conclusion, this SEP achieved its aims of exploring the needs of carers of people

with personality difficulties and carer experiences of the Cygnus course. Ways in which the

support offered to carers may be improved has also been considered. Using a qualitative

approach has allowed for more in-depth discussions and richer data, as set out within the

aim of the project.

The following recommendations have been identified:

Continue regularly running the Cygnus course.

Consider how to prepare participants for the academic content and potential emotional

impact of attending the course.

Consider how participants may feel more supported when the course comes to an end.

Continue to inform participants about the bi-monthly Andromeda peer support group.

Continue gathering feedback from a variety of participants, including those who chose

not to take part in this SEP, and those who have dropped out of attending the course.

Continue to connect with local health professionals and services to promote the Cygnus

course and communicate what support is available for carers of people with personality

difficulties.

Consider how support could be offered to individuals who struggle to attend and engage

in the Cygnus course group environment.

5. Dissemination of Findings

The findings from this evaluation were shared with the project commissioner and

presented to the wider Leeds Clinical Psychology programme, at a SEP conference in

October 2019. A poster outlining the evaluation was also displayed at the SEP

conference (see Appendix 8).

The report and poster will be shared at the upcoming PDMCN Clinical Governance

meeting, as well at the Carer Involvement Group (known as ‘Orion’).


20

Abstracts will be submitted for the poster to be presented at the British and Irish Group

for the Study of Personality Disorder (BIGSPD) Conference in March 2020, the Annual

NHS R&D Forum Conference (RDF20) in May 2020, and the LYPFT Research Conference.

An abridged report is in preparation for circulation to the R&D Team and LYPFT R&D

magazine ‘Innovation’.

A research paper based on this SEP will be prepared for publication to a peer reviewed

journal.

6. References

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(5th ed.). Washington, DC: Author.

Bailey, R. C., & Grenyer, B. F. J. J. o. P. D. (2014). Supporting a person with personality disorder:

a study of carer burden and well-being. 28(6), 796-809.

Bateman, A. W., Gunderson, J., & Mulder, R. (2015). Treatment of personality disorder. The

Lancet, 385(9969), 735-743.

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in

psychology, 3(2), 77-101.

Braun, V., Clarke, V., Hayfield, N., & Terry, G. (2019). Thematic analysis. Handbook of Research

Methods in Health Social Sciences, 843-860.

Chiocchi, J., Lamph, G., Slevin, P., Fisher-Smith, D., & Sampson, M. (2019). Can a carer (peer) led

psychoeducation programme improve mental health carers well-being, reduce burden

and enrich empowerment: a service evaluation study. The Journal of Mental Health

Training, Education and Practice, 14(2), 131-140.

Dunne, E., & Rogers, B. (2013). “It’s us that have to deal with it seven days a week”: carers and

borderline personality disorder. Community Mental Health Journal, 49(6), 643-648.

Fanaian, M., Lewis, K. L., & Grenyer, B. F. (2013). Improving services for people with personality

disorders: Views of experienced clinicians. International Journal of Mental Health

Nursing, 22(5), 465-471.

Grenyer, B. F., Bailey, R. C., Lewis, K. L., Matthias, M., Garretty, T., & Bickerton, A. J. J. o. p. d.

(2019). A randomized controlled trial of group psychoeducation for carers of persons

with borderline personality disorder. 33(2), 214-228.

Lamont, E., & Dickens, G. L. (2019). Mental health services, care provision, and professional

support for people diagnosed with borderline personality disorder: systematic review of

service-user, family, and carer perspectives. Journal of Mental Health, 1-15.

Lavrakas, P. J. (2008). Encyclopedia of survey research methods. Thousand Oaks, CA: Sage

Publications, Inc. Accessed from:


Prepared on the Leeds D.Clin.Psychol. Programme, 2019 22

https://methods.sagepub.com/reference/encyclopedia-of-survey-research-

methods/n174.xml

Lawn, S., & McMahon, J. (2015). Experiences of family carers of people diagnosed with

borderline personality disorder. Journal of psychiatric mental health nursing, 22(4), 234-

243.

Ohaeri, J. U. (2003). The burden of caregiving in families with a mental illness: a review of 2002.

Current Opinion in Psychiatry, 16(4), 457-465.

Pearce, J., Jovev, M., Hulbert, C., McKechnie, B., McCutcheon, L., Betts, J., & Chanen, A. M.

(2017). Evaluation of a psychoeducational group intervention for family and friends of

youth with borderline personality disorder. Borderline personality disorder and emotion

dysregulation, 4(1), 5.

Personality Disorder Consensus Group. (2018). “Shining lights in dark corners of people’s lives”

The Consensus Statement for People with Complex Mental Health Difficulties who are

diagnosed with a Personality Disorder. Accessed from:

https://www.mind.org.uk/media/21163353/consensus-statement-final.pdf

Ryan, K. E., Gandha, T., Culbertson, M. J., & Carlson, C. (2014). Focus group evidence:

Implications for design and analysis. American Journal of Evaluation, 35(3), 328-345.

Sutherland, R.C., Baker, J. & Prince, S. (In press). Support, interventions and outcomes for

families/carers of people with Borderline Personality Disorder: A systematic review.

Journal of Personality and Mental Health.

The Lancet Psychiatry. (2019). Beyond the Borderline. Accessed from:

https://www.thelancet.com/action/showPdf?pii=S2215-0366%2819%2930051-3

Tracy, S. J. (2019). Qualitative research methods: Collecting evidence, crafting analysis,

communicating impact: John Wiley & Sons.

https://methods.sagepub.com/reference/encyclopedia-of-survey-research-methods/n174.xml

https://methods.sagepub.com/reference/encyclopedia-of-survey-research-methods/n174.xml

https://www.mind.org.uk/media/21163353/consensus-statement-final.pdf

https://www.thelancet.com/action/showPdf?pii=S2215-0366%2819%2930051-3



7. Appendices

7.1 Appendix 1 – Topic Guide

Carers Focus Group Topic Guide

1) Introduction – aims and purpose of focus group. Structure of session, length,

expectations, group rules. Data protection and confidentiality / recording of

group.

2) Questions

What do you think were/are your main needs as a carer supporting someone

with a diagnosis of personality disorder?

How would you describe your experiences of attending the group?

What aspects of the group have you found most helpful?

What aspects of the group have you found the most unhelpful?

Can you describe any challenges you have experienced whilst being in the

group?

Do you feel you have been supported / or not supported by the group

facilitators? Can you explain why?

What difference has the carers group made to your life? How?

What (if anything) gets in the way of or makes easier to attend the group? (Ease

of access).

Would you recommend the carers group? Why?

How do you feel the support offered to carers could be improved?

What was the impact of having an expert by experience as a group co-facilitator?

(if applicable)

Do you have any other thoughts or comments you wish to share about your

experience?

3) Reflections on focus group experience.

4) Close – questions / further information.



7.2 Appendix 2 – Consent Form

CONSENT FORM

Please read each of the statements below and place an X in the box if you agree.

1. I confirm that I have read and understood the participant information sheet (V2

07.01.19).

2. I have had the opportunity to ask questions and have had these answered

satisfactorily.

3. I understand that my participation is voluntary and that I am free to withdraw

at any time prior to or during the focus group without giving a reason.

4. I understand that once the focus group has begun, all data will be

anonymised and I will no longer be able to remove my personal responses

from further analysis.

5. I agree to the focus group being audio recorded.

6. I give my permission for the anonymised data collected from the focus group

to be used for audit and service evaluation purposes.

7. I give my permission for the anonymised data to be submitted for publication.

Name of Participant Signature Date

Focus Group facilitator Signature Date

If you have any questions or concerns, please do not hesitate to contact Sarah Atkinson (Psychologist in Clinical Training / focus group facilitator) at [email protected] or Dr Ruth

Sutherland on 0113 8557950 or [email protected]

mailto:[email protected]




7.3 Appendix 3 – Participant Information Sheet

Carers Focus Group Meeting Personality Disorder Managed Clinical Network (PDCMN)

Participant Information Sheet

Information You have been invited to take part in a focus group regarding the six-week group for carers of people with a personality disorder. We wish to hear about your thoughts and experiences of attending the group. This will help us to understand your experiences better and help us to improve the service we provide to carers both now and in the future. Before you decide to take part it is important you understand what is being asked of you and how your information will be used. Please take time to read the following information and discuss it with others if you wish. You can change your mind at any time and withdraw your information without giving a reason. You are welcome to phone me if you would like any further information. Ethical approval has been received from the School of Medicine Research Ethics Committee DClin Psych sub-REC (approved 17.01.19).

Who is involved in the focus meeting? The focus meeting will be led by Sarah Atkinson (Psychologist in Clinical Training), who is carrying out this evaluation as part of her training at Leeds University. All information will be stored securely and individual information will not be shared beyond the research team.

What will happen if I choose to take part? You will be invited to attend a focus meeting with other carers on Wednesday 30th January at Carers Leeds. The focus meeting will be guided by Sarah Atkinson who will introduce the topics and discussion points to the group. You will be invited to arrive from 5pm for refreshments and an opportunity to meet other carers. We will aim to start the meeting promptly at 5:30pm until approximately 7pm. The focus group will aim to explore:

4) The needs of Carers of people with personality disorder 5) Carer experiences of the Carers 6-week psychoeducational course



6) What aspects of the course may have been helpful or unhelpful 7) How we might improve the support we offer to Carers

What will happen to the information that I give? We would like to record the focus meeting using an audio recorder; this would allow us to capture the majority of information in the focus meeting given by different members. All recordings will be transferred immediately after the focus meeting onto a secure network. The original recording will then be deleted from the device. The recording will be written up and any personal or identifying information will be removed or disguised. All your focus meeting materials will be stored securely at the PDMCN. Your feedback may be used for future evaluation, research and audit purposes and to inform care planning. Information will be analysed and will be reported in service evaluation reports. Results of the service evaluation project may be disseminated in the NHS Leeds and York Partnership Trust or submitted for publication in an appropriate academic journal. All information will be stored securely and individual data will not be shared beyond the research team.

Confidentiality/ anonymity Any information which may identify an individual during the focus meeting will be anonymised during analysis, for example changing names.

What if I change my mind?

You may withdraw prior to or during the focus group at any time. However, due to the

nature of a focus group it will not be possible to withdraw any contributions already

provided. If you have a place in the focus group but no longer wish to attend, please inform the research lead so that your place can be offered to someone else.

Further information / next steps If you have any questions about the focus group or how your information might be used, you can direct these to the Research lead who will be happy answer these. If after reading this information sheet you are happy to take part in the focus meeting, please complete the attached consent form and return it by email ([email protected]) or by post to: Ruth Sutherland Leeds Personality Disorder Services Unit 24, Sugar Mill Business Park Oakhurst Avenue Leeds LS11 7DF




You may give your verbal consent prior to the focus session, to provide an opportunity to

ask and have any questions answered on the day of the focus session. However, written

consent must be sought prior to the group beginning. Please note that although we value all of your views, the maximum number of required participants able to attend the group is 8. Once places have been filled, you may be placed on a waiting list and another focus group may be arranged for a future date. We very much look forward to seeing you at the focus group meeting if you decide to attend.

Contacts

Research lead: Dr Ruth Sutherland (Clinical Psychologist, PDCMN), 0113 …, [email protected]

Focus group facilitator: Sarah Atkinson (Psychologist in Clinical Training), [email protected]

Supervised by: Dr Tom Cliffe, Clinical Psychology Training Programme, 0113 343 3407, [email protected]




7.4 Appendix 4 – Needs of Carers Illustrative Quotations

Theme Illustrative Quotations

Increasing understanding

Understanding why they behaved in the way that they did. I felt ignorant… so the thing that drove me to go on the course was really a quest for information. (Participant 4) For me it was a new diagnosis, so I was interested in learning more about it and to understand where it came from, and what the signs were of that diagnosis. (Participant 5) It’s very hard as a lay person to understand what behaviours are linked to personality disorder, and what are just the behaviours of your loved one anyway. (Participant 6)

Learning more effective ways of managing/ supporting

You are trapped in this environment with your own situation… a) you don’t understand what’s going on and, b) you think, well you guess there are other people like that, but you don’t know anybody because you don’t mix with anybody like that, and you don’t know any strategies other than what you’re doing. And you know what you’re doing is not working. So it’s a downward spiral all the time, so you’re getting yourself into a complete mess all the time. (Participant 2) The main need was we split up and I was feeling, you know, how am I going to support my daughter going forward… So it was more about my needs to be able to support my daughter… So increasing my understanding helps me to explain it. (Participant 6)

Opportunities to share personal experiences

Not feeling so alone…Having people who understand and understanding why I’m so tired You don’t have to go through and explain things every time, this is what’s happening, this is why it’s happening. I don’t want solutions. I just need to get it off my chest a lot of the time. (Participant 1) Having someone you can talk to, that you don’t have to explain everything to. I get now that I do need people just to talk to. You just need someone to let it out to… just to have someone who goes ‘yeah, I get it’, without any explanations or



any detail about the whole thing… just someone who understands. (Participant 3)

Support navigation

You don’t know what’s best for you and where’s best for you. You need somebody to point you in the right direction. You can spend hours on the internet, finding lots of different support places that aren’t really for you. You need something a little more bespoke. (Participant 2)



7.5 Appendix 5 – Positive Experiences of Participating in the Cygnus Course Illustrative Quotations

Theme Subtheme Illustrative Quotations

Learning Course delivery I think the educational side of it is really useful… I liked the structure of the group and how it progressed… If you did miss it, people could come to the next one still. (Participant 1) The course content was very good… The [facilitators] explain it very very well. It’s easy to get off piste with it, as I say people do get a bit carried away at times, but they’re very good at bringing you back on track and keeping to subject matter. (Participant 2) The information around it was really good. That was almost as good as having people who knew what was going on…Everything seemed to be the right information at the right time. (Participant 3) I liked the way that the information was separated, the diagrams, the way it was presented… I liked the recap at the beginning of the next week… Overall it was very well planned out, in terms of the sequence of understanding. (Participant 4) I thought the group was very well run and the facilitators were excellent…Each session was interesting in a different way and was well explained, and I found it very helpful…I think it’s a mix of the theory.. the background, but then also trying to apply that into our own situations with discussion…The handouts were good, in that they helped you go away and think about what was said in the group…We did some ground rules very early on and that probably helped people feel comfortable… giving people the assurance that it was ok to share things…I thought it was a really great venue. (Participant 6)

Strategies I think the relaxation thing at the end helped. The first week I thought I’m not sure what this is all about but I’ll go along with it. But you do actually need it, because there’s some heavy stuff and a lot of emotions going on and I think you just need to calm down…There are strategies that we put in



place now, that I’ve learned from being on that course, that I would never have known had I not been on it. (Participant 2) It certainly gave me ideas to try different ways of bringing him [partner] back down. Lots of information, lots of ideas, and lots of support from other people. (Participant 3)

Understanding Everything makes a lot more sense…We [participant and their partner] have a much better understanding of each other. The things I learned from the group… we’ve tried things out to see what works for us. I think there are lots of bits that are seeded into our lives…It’s so helpful just to understand what’s going on. (Participant 1) I think by the third week, I was starting to get a lot more understanding of what was going on… It’s given me an understanding of what my son’s had to go through. (Participant 2) I didn’t know what to expect from it going in, so I didn’t have any expectations… what actually happened was great. It answered a lot of questions I didn’t even know I had. And filled in so much detail around what I didn’t understand, which was pretty much everything. (Participant 3) I began to want to learn more, wanted to understand the theory a wee bit more…At the [support] group that I went to… I said ‘get on that course and you’ll understand so much more’. Knowledge is power. And having the knowledge makes so much difference. (Participant 4) While they [facilitators] listen and answer questions, what was really good as well was they’re willing to challenge our preconceptions. It’s very hard as a lay person to understand what behaviours are linked to personality disorder, and what are just the behaviours of your loved one anyway. So I think they helpfully challenged some of our views on that…It helped me to piece together a lot of thoughts that I had. But it kind of confirmed some things I thought, and challenged me in other ways. So that really helped me understand why certain things happened, and why certain things are still happening. (Participant 6)



One of the main things we learned about personality disorder, which I didn’t know, was that a difficult or traumatic childhood is usually the background. Before [the course] I didn’t really know what personality disorder was or know much about it. (Participant 5)

Different perspectives

My group was good ‘cos there were partners, and children, and parents of people with personality disorder. So it was very different perspectives which I quite liked… And I think it’s good to mix with people because maybe I can learn something. (Participant 1) It may be easier for me because I’m not dealing with someone, it’s my ex-partner, it’s not my child. And that was really helpful to have in the room actually. (Participant 6) Yes it’s a different perspective. (Participant 5)

Connectedness Sharing experiences

Having that carer’s group was a good place to just get things out that you can’t really talk about… I think just having some place to talk, that was the most helpful thing… A sense of fitting in with people, not feeling so alone…At the carers group I didn’t have to feel that frustration of having to explain what’s going on every time, ‘cos it’s like ‘oh everyone is getting this’. (Participant 1) It’s quite a relief actually, to offload…Shared experience is always helpful to know that you’re not on your own… It’s nice to be in a room full of people where they just get what’s going on, because you can have all the friends and support in the world, but they have got no experience of living with people like that, and these people do, and that’s quite immediate quite early on. (Participant 2) After the first week, the cohesion of the group improved considerably, and the feeling was that we were all there, we were all in the same boat, we all needed support, we all, of you like, made errors as parents or carers or whatevers, and we were all there needing a bit of support. (Participant 4) I have people I can talk to. … everybody’s personality disorder is different, but people just get what you’re talking about without asking 100s of questions and looking at you like ‘they’re just having a tantrum’. But the people that just get it, they just understand without any sort of questions. (Participant 3)



We all thought ‘oh yeah that’s happened to me’. (Participant 6) Being with a group of people who understand your situation. (Participant 5)

Supported Definitely supported, I can’t say anything more, they [the facilitators] are really good. (Participant 1) You have support contacts should you need to take them. (Participant 2) It kind of felt a bit like a warm blanket…I was definitely supported. It appeared like they [the facilitators] were bringing other people in who maybe were sat there not wanting to or not feeling like they could. (Participant 3) Having a break mid-way through was quite good, ‘cos there was a chance to chat. We became, I felt, quite supportive…Most of us have those… a realisation moment. We were supported in that. You weren’t left alone. (Participant 4) I felt welcome and listened to. They [facilitators] were happy to respond to questions, and I think we very quickly formed as a group… I think everyone felt as though they were comfortable there and were able to ask what they wanted, and also gave their own input which I thought was good… I’ve always said that time from another person who’ll listen is the most helpful thing. (Participant 5) They [facilitators] made us feel very welcome, and responded to everyone as individuals…It became a bit like a support group that you went to every week for that time...They [facilitators] seemed to remember things that you’d said. So that was quite nice. It felt as though they cared enough to remember what was going on for each individual. (Participant 6)

Personal Benefits

Worthwhile I was very glad by the end of it that I’d done it. I am completely sold on it really… I’ve got nothing but praise for it… I think you get a very narrow minded view of what’s going on until you go, because you are trapped in this environment with your own situation… a) you don’t understand what’s going on



and b) you don’t know anybody because you don’t mix with anybody like that, and you don’t know any strategies other than what you’re doing, and you know what you’re doing is not working… I’m on the waiting list for some help through Carer’s Leeds… it’s just getting to know what’s there, and this course gives you that information if you didn’t have it before. I didn’t. (Participant 2) I don’t know if enjoyable is the right word, it was helpful. (Participant 3) I think it’s vitally important to anyone who has any link to anyone with personality disorder. (Participant 6)

Further support I’ve met people through it as well and that’s helpful… to see that there are other people who understand it…I have more support from other people. (Participant 1) It has made a difference because I now go to the carers [support] group… I wouldn’t have known about the carers group, so it opened up a new avenue for me… it’s given me a support network… It opens up your environment, and opens up possibilities that you didn’t have before... You meet other people who may have got a different way of coping with things, different strategies to tap into. Some people make bonds with other people. (Participant 2) I met a couple of people in there who I still keep in contact with and meet up with. And it led me to the bi-monthly carers group. So it’s given me somewhere to go and talk to more people. (Participant 3) The [support] group is good to follow on from the course…I think all it’s done has given me a bit of a security blanket… I think it will be a course to fall back on when/ if she [daughter] becomes ill again. (Participant 4) A lot of people who’ve been on the course, we do see at the support group. So that’s good. (Participant 6)



7.6 Appendix 6 - Challenging Experiences of Participating in the Cygnus Course Illustrative Quotations

Theme Subtheme Illustrative Quotations

Emotional Impact

Emotionally evoking

The first week is quite overwhelming, so having it in a gentle, warm way probably helps quite a lot. It brings up a lot of feelings, but it wasn’t distressing… it just brings stuff up and afterwards it’s quite tiring. I’m so tired already and this is happening before and now I’m getting home to it. So it is a space away from it but it’s also space around the situation. I think it’s quite a difficult situation to be in a group for some people. I think it can be quite a vulnerable place. Depending where things are with you and whoever has personality disorder, it might not be good, if you’re right in it at that time. (Participant 1) I think there’s a big, sort of an urge, to want to try to unburden yourself on the course. People come with a lot of issues, and because people understand what’s going on, it can become a bit personal. It’s difficult to try and get that balance I think, between being there to learn something and get too bogged down with an individual’s issues. It’s a bit daunting at first, I think it’s hard to open up, something that’s quite personal… quite a moving thing really. There was one point where I found it quite upsetting actually, that I had to wait so long to understand it all, so I did find it quite emotional really. (Participant 2) I found some of it quite difficult to comprehend… quite difficult to stomach. And other bits I found really useful and really, I suppose, comforting. I found some of it a bit, almost shocking… I had gone to the group wanting to be told that none of this was my fault, that it just happened. But you don’t get told that. It was the first week that was a bit shattering… I nearly didn’t come back after the first week. I thought ‘I’m not sure I want to be told this’. There was quite a lot of personal stuff… of course it was about the person you’re caring for, but it was as much about us as it was about them.



This was about something that means something to us, she [facilitator] was talking about people who we’re caring for in this kind of academic way. And that’s quite weird really. You’re lifting the lid. You are having a look under the skin, aren’t you? That’s what it’s about. (Participant 4) I think it was quite upsetting for some people, so it took them a bit longer, but I think they eventually felt comfortable. I think talking about your personal situation is emotional, it’s never easy. It can be a bit overwhelming. (Participant 5)

Ending I think it’s a great course, but I think a lot of people feel a bit bereft at the end of it… I think there are some unmet needs after it’s over for some people. Personally, it still raises a lot of questions, that perhaps you still want to find out a little bit more about, and to delve a little bit deeper. At the end you feel a bit high and dry sometimes. (Participant 2) There is a feeling of being a tad bereft. And curiosity of how others have gone on, because people have poured out their stories, and you kind of what to know ‘well what happened next?’. (Participant 4) At the end of it, it was quite sad not to be able to go again because it was helpful to see these people and talk about things in a structured way… at the end it’s a bit bereft. (Participant 6) All this stuff was going on, I didn’t understand any of it, then at the end of it, I still didn’t really understand much of it, but knew better, had the basics to understand why and what. I just wish it could’ve been longer. It does feel a little like ‘yep that’s it we’re done now, you know everything, you’ve got all the tools, go fix’. A little bit… It definitely felt like ‘oh I won’t see these people again’. (Participant 3)

Difficult realisations

I suddenly realised that actually he [partner] is probably short of the diagnosis, of having exactly the same diagnosis. And that’s a bit revelatory. That’s a bit shattering. (Participant 4)



That awareness is quite helpful, to know that it’s still an ongoing concern. I’m not saying it was negative, it was a realisation ‘crikey we’re going to have to deal with this forever’, perhaps. (Participant 6) The actual issue of living with somebody isn’t over, and that’s always a working progress. At the end of the day you’re still on your own, you go back home and you’ve still got it to deal with. (Participant 2)

Practicalities Handouts/ content

There was a hell of a lot of reading to do… I didn’t find it particularly helpful to do a lot of the reading because I just didn’t have the time. (Participant 2) The intellectual level surprised me. There were people there who wanted a lot more information than I did, and they wanted a lot more technical details. But I found it a bit much, personally. So that daunted me at the beginning. I think I just hadn’t expected it. We had handouts, although I found them a bit daunting. I would’ve avoided giving that amount of information, so I tended not to like it. (Participant 4)

Group discussions

Listening to other people and letting them have their say, and trying to get your point across without it all getting too personal, I think it is quite a challenge. (Participant 2) There was a bit of time pressure, ‘cos there is so much that we probably all want to discuss and get off our chest… At times it felt like we got discussing something, and then we had to go through the last bits very quickly. I think because of how many people are in the group, you’ve got to be quite concise with how you input. So sometimes it’s hard to get across what you wanted to say, without saying war and peace. I think that was quite challenging. (Participant 6) Sometimes I find it hard when other people don’t talk as much. (Participant 1)



Personal challenges

If it had been nearer to home, but you can’t have everything. It was in the winter when I went so it was a bit dark, and it was in not the nicest end of town… I did feel a bit vulnerable getting there. I didn’t particularly like the venue. (Participant 2) It’s a challenge to put that model that’s being put forward and matching your experiences with it. What happened to you that week might influence how you interpret that model… Something might’ve happened that week that’s really upset you, so how do you step back and see things in the context of a theoretical model. (Participant 6) If it had been every other week 1) that would’ve been easier for me, ‘cos I would’ve been on the same shift every time but also would’ve felt as though it was going on for longer. So it was like here’s your 6 weeks, bye… If it had been longer it would’ve felt like ah a nice long warm 12 weeks. There were no challenges really, other than the little relaxation thing at the end. So it was lovely and relaxing, but the picturing things in your mind, never got it. But that’s just me. Work definitely got in the way, but, life. The location was fine. The parking outside the building was a bit fun, but I never had any problems with it. I wouldn’t define myself as a carer. I kind of accepted that label when it was explained to me but it feels a bit wrong. (Participant 6)



7.7 Appendix 7 – Improving Services for Carers Illustrative Quotations

Theme Illustrative Quotations

Further support

I just wish it could have been longer. If it had been every other week 1) that would’ve been easier for me, ‘cos I would’ve been on the same shift every time but also would’ve felt as though it was going on for longer. So it was like here’s your 6 weeks, bye… If it had been longer it would’ve felt like ah a nice long warm 12 weeks. After the group there’s the Carers Leeds thing, and if that was a bit more frequent, that would be great. Something like where we can go to Carers Leeds, but it be back being the group you were with. Or not necessarily just the group you were with, but other people who’d been on the course. A chance to maybe talk about, from what you’d learned, what you’d done. (Participant 3) Sometimes I wonder if getting carers to understand what’s going on, is a bit of taking off professionals responsibility… It can lead people to feeling less supported. So then is it kind of shifting from professionals to carers to care for the person… I don’t want it to become too focused on carers. (Participant 1) Once you’ve had the 6 weeks, you want it to continue. (Participant 4) It would’ve been helpful to have had a chat with one of the facilitators beforehand, but also then afterwards, just to tie up a few loose ends, or set the scene almost, before the course started… I just wonder whether that would’ve been helpful at the end. Almost like a half an hour chat, one-to-one. At a different time… I think it’s probably good to go away and let everything settle. So I would be thinking maybe about 4 weeks, a month later. Just to tie up and loose ends and to plan moving forward. (Participant 6) When they come to the end of the 6 weeks, they feel a bit like ‘oh, what do we do now?’. Personally it still raises a lot of questions… perhaps you still want to find out a little bit more about, to delve a little deeper. You perhaps want a little bit more help with how to deal with some of those [behaviours] than the course gives you. And that’s perhaps how you feel at the end of the 6 weeks, that you want a bit more practical



help. You feel as though you’ve got some tools to manage a bit better at the end, but I think… doesn’t go far enough. You come to the end of the 6 weeks and there’s still that element of well, what now? (Participant 2).

Awareness/ access to support

It draws out a lot of stuff in you I think. You wish you’d done it a long time ago… I didn’t know it was there. I think that if I had known about all the support groups that are out there a few years ago, I would’ve tapped into it a lot earlier. (Participant 2) I could’ve done with this course 10 years ago, when things were bloody awful. Whenever the young person or whoever gets their diagnosis, they [carers] should be told about this course and support group, because they’re the ones who need it. It was like you needed to know what you needed… And I didn’t know what I needed. I just knew I needed help. (Participant 4) It would’ve certainly helped to have done it 6 or 7 years ago. If somebody is interested in going on something, waiting doesn’t particularly help. I think if… there was information out there in different places, then a lot more people would want to come on the course. I just wonder whether organisations like that, who do have touch points with potential service users, but also their families, is there a better way of getting messages out through them? It would be nice to think that health professionals recommend it. And I don’t know if they ever get any feedback… they should know about the impact it has on people. (Participant 6)

Flexible options of support

I don’t know how you get across to the people who can’t open up very well…. I think should there be something for those people other than the 6 week course… Is there some sort of help available that doesn’t require a person who’s uncomfortable in that situation. (Participant 2)



Preparation for the Cygnus course

Maybe if, when you got the information about it [the course], it just gave you, you know, ‘we’re not going to give you ways to make sure it never happens, but we are going to help you understand’. Just that little bit of an explanation of what you’re going into. That might help people have a little bit of an expectation of what it’s going to be. Rather than just going in blind and then it not being what you were hoping for. (Participant 3) It would be good to have some stuff to read before the course, just to give us a bit of grounding. And even the materials to read before the session. It would’ve been helpful for me to have had a chat with one of the facilitators beforehand. (Participant 6)

7.8 Appendix 8 – Poster

The experience of a psychoeducational course for carers of ... · NHS Foundation Trust . ......

Documents

Transcript of The experience of a psychoeducational course for carers of ... · NHS Foundation Trust . ......