Children’s experiences of participation in the cleft lip and palate care pathway

DOI: 10.1111/j.1365-263X.2011.01214.x

palate care pathway
Children’s experiences of participation in the cleft lip and
MELANIE HALL1, BARRY GIBSON2, ALLISON JAMES3 & HELEN D. RODD4

1Academic Unit of Oral Health and Development, School of Clinical Dentistry, Claremont Crescent, Sheffield, UK,2Academic Unit of Dental Public Health, School of Clinical Dentistry, Claremont Crescent, Sheffield, UK, 3Department of

Sociology, School of Sociological Studies, Elmfield, Sheffield, UK, and 4Academic Unit of Oral Health and Development,

School of Clinical Dentistry, Claremont Crescent, Sheffield, UK

International Journal of Paediatric Dentistry 2012

Aim. This qualitative study sought to explore chil-

dren’s perspectives on their participation in the

cleft lip and palate care pathway.

Design. Eight boys and nine girls (aged 8–17

years), with a range of cleft types and who were

patients at a British dental hospital each took part

in two child-centred interviews which incorpo-

rated participatory activities. An initial interview

focused on children’s general life stories, and

these often encompassed a discussion about cleft

lip and ⁄ or palate. A follow-up interview explored

Correspondence to:

M. Hall, Department of Oral Health and Development,

School of Clinical Dentistry, Claremont Crescent, Sheffield

S10 2TA, UK. E-mail: [email protected]

� 2012 The Authors

International Journal of Paediatric Dentistry � 2012 BSPD, IAPD and Bla

specific aspects of the condition and its related

treatment.

Results. Data revealed the varying roles that

young people can play in decision-making, which

can be described as active or passive. In addition,

the dynamic degree of participation was high-

lighted with patients occupying different roles

throughout the care pathway.

Conclusion. The research provides an insight into

treatment decisions, and how young people, their

families, and clinicians interact to arrive at these.

Findings provide further evidence to support the

important contribution young patients can make

in their own treatment choices.

Introduction

Approximately one in 700 children born in

the UK is diagnosed with a cleft lip and ⁄or

palate each year.1 A well-established ‘care

pathway’, provided by a multidisciplinary

team and consisting of surgical and non-sur-

gical interventions, begins at birth and con-

tinues into the late teens. There, however, is

a paucity of research on children’s experi-

ences of this care pathway. The condition and

the treatment present a unique opportunity

to explore children’s perspectives of their role

in decision-making because of the number

and duration of interventions typically experi-

enced. Decisions are continually required

along the pathway for ongoing treatment.

Additionally, throughout the process,

patients’ decision-making capacity develops as

they move from infancy to adulthood.

In the past, there has been a tendency for

research on children to be carried out by

proxy, and the voices of adults, such as par-

ents, teachers, and health professionals, have

taken precedence over those of children

themselves.2,3 In recent decades, however,

increased attention has been paid to chil-

dren’s own experiences of illness and disabil-

ity.4,5 There has therefore been a transition

from research on children to research with

children.6,7 Studies relating to a variety of

conditions have demonstrated the merit of

exploring children’s first-hand accounts to

gain variable insights into their experiences of

illness8 and their involvement in healthcare.9

Within the field of paediatric oral health, a

systematic review highlighted that only 1.3%

of research studies actually involved children

as active participants.10 This would appear to

contravene current policy, such as the UK

Children’s National Service Framework,11

which advocates the involvement of children

in their healthcare and in the planning, deliv-

ery, and evaluation of services. It has been

acknowledged that children are articulate and

willing to be heard, providing the approach

ckwell Publishing Ltd 1

2 M. Hall et al.

and research tools are appropriate, and the

researcher is sufficiently skilled.12,13 Child-

centred or ‘participatory’ techniques refer to

approaches that allow children, rather than

adult researchers, to shape the data collection

process and often incorporate exercises, such

as timelines, diaries, and spider diagrams to

aid data collection. Such approaches help

engage children in a task and allow them to

exert control over the interaction.14 It is also

possible to combine them with traditional

research methods, such as interviews.

The aim of this qualitative research was to

explore children’s perspectives of the cleft

care pathway, particularly in relation to their

experiences of participation in decision-

making. The study sought to fully engage

children, using familiar participatory method-

ologies and to give them enhanced control in

the research process.15

Method

Participants

A purposive sampling approach was adopted,

where patients attending the orthodontic,

paediatric dentistry, or multidisciplinary cleft

clinic of the Charles Clifford Dental Hospital,

Sheffield, UK, were approached, and could

volunteer to participate in the research.

Recruitment took place at scheduled appoint-

ments at the dental hospital over a 12-month

period (May 2007–May 2008). Participants

were drawn from children aged 8–17 years.

The lower age limit represents a significant

milestone, because it is around 8–9 years that

consideration is given to orthodontic treat-

ment and a possible alveolar bone graft. Chil-

dren with a learning disability or significant

medical history were excluded from the study

to ensure the focus was on cleft lip and ⁄or

palate. Only English-speaking children were

approached, as it was not feasible to utilise

the services of an interpreter. The principal

investigator (MH) explained the nature of the

study to potential participants and their fami-

lies and provided an information pack, which

included research information, reply slips,

and a pre-stamped envelope for parents

and children. Written parental consent and

International Journal of Pa

participant assent were obtained. Formal ethi-

cal approval was obtained from the Sheffield

NHS Research Ethics Committee in May

2007.

In total, 57 patients and parents met the

inclusion criteria and were invited to take

part in the study. Of these, 40 children and

their parents did not wish to participate.

Recruitment continued until data saturation,

and as the data collection process progressed,

it became apparent that a rich data set had

been achieved with 17 participants, thus no

further recruitment was undertaken. The

study participants included eight boys and

nine girls, aged 8–17 years, who had a variety

of clefts, including: cleft lip only, cleft palate

only, unilateral or bilateral cleft lip and pal-

ate. They came from a wide spectrum of

socio-economic backgrounds, but only White

British children volunteered to be in the

study. Regrettably, there was no representa-

tion from any ethnic minority groups, despite

initially approaching a number of families of

different ethnicities.

Data collection and analysis

Data collection comprised two face-to-face

interviews, which incorporated a variety of

activities. All interviews were conducted by

the principal investigator. Topic guides,

informed by the available literature, were

devised to guide the interview. Owing to the

child-centred nature of the research, the topic

guide was not designed to be an exhaustive

list of all the aspects that needed to be

discussed but was used in a flexible manner.

An optional activity booklet was produced for

participants to complete in their own time.

This included a ‘best and worst things’ exercise,

pages to draw on, a ‘decisions tree’ to rank the

individuals involved in decision-making, and

a ‘top tips’ exercise that invited participants to

give advice to a fictional character undergoing

the same treatment as them. These activities

were discussed in the follow-up interview.

Data collection was carried out between

May 2007 and July 2008. The research lar-

gely took place in participants’ homes and,

wherever possible, without parents being

present. Interviews were audio-recorded,


ediatric Dentistry � 2012 BSPD, IAPD and Blackwell Publishing Ltd

Participation in the cleft lip and palate care pathway 3

transcribed verbatim, and supplemented by

field notes. The names used in this article are

pseudonyms, which participants were invited

to choose to maintain anonymity. A thematic

approach to data analysis was adopted, which

was concerned with the content of narra-

tives, and this allowed the data, rather than

theory, to drive the analysis. Each transcript

was read several times and analysed for

recurrent themes, and the data organised

accordingly.

In relation to participation in the cleft care

pathway, children’s accounts included expe-

riences of appointments, whether they had

any choice regarding treatment and whether

they had decided against treatments and

the roles of professionals and parents. This

article, therefore, explores the following key

themes:d Active participation in the pathway;d Passive roles in the pathway;d Fluid nature of involvement;d Alternative forms of involvement; andd Child ⁄adult relations.

Fig. 1. Elaine’s decision making chart.

Results

Analysis of transcripts and activity sheets pro-

vided a fascinating insight into children’s

experiences of the cleft lip and palate care

pathway. The ‘decisions trees’ were specifi-

cally used to explore children’s views on

which individuals possessed the ‘most and

least say’. Discussions around this activity,

and aspects of cleft lip and palate treatment,

revealed the extent to which children and

young people participated in their own treat-

ment. The participants provided clear exam-

ples of both active and passive participation

in treatment choices, which are described in

more detail later.

Active participation

When completing the decision’s task, eight

participants reported that they considered

themselves to be at the top of the hierarchy.

They perceived that health care professionals

had an important role in determining the

course of treatment, while parents provided

support (Fig. 1).



Two participants placed their parents at the

top of the diagram, but they were second, fol-

lowed by clinicians. This suggests that some

participants regarded their role in their treat-

ment as important, but did not feel they had

the most influence. Specific examples of deci-

sion-making were revealed in relation to the

opportunity to approve or decline particular

treatments.

‘If I want it, they’ll do it and if I feel like I’m not

ready for it, they’ll not do it’ (Chloe, 15).

‘Everything that’s been suggested to me, then I say

whether I want it or not’ (Adam, 17).

‘Like I decide what’s gonna happen to me, if I want

it done, but like if I don’t want it done, they give me

more time to think it over, but if I eventually decide

that I don’t want it, I probably wouldn’t have it

ckwell Publishing Ltd

4 M. Hall et al.

done. But I want it [orthodontic treatment] done

cause it’ll get my teeth straight and stuff’ (Nathan,

13).

Interestingly, decisions not to undergo par-

ticular aspects of treatment tended to relate

to more cosmetic procedures that are carried

out later on in the pathway. Participants who

had declined procedures demonstrated the

capacity to take benefits and risks into

account when considering treatment. Jamie

had previously declined a lip revision.

‘I can remember my mum asking me ‘is your lip

getting on your nerves’, cause they’ve said they’ll try

and smooth it out a bit for you but I said no, I’ll just

leave it, if it’ll cause me pain, I’ll leave it’ (Jamie,

13).

A similar attitude was adopted by Louise:

‘They’ve offered me some cosmetic surgery, just to

clean it up, but they’ve said it could make it worse

and I don’t want to risk it unless they say it’s a hun-

dred percent okay and if it’s not for medical, it’s just

for vanity, I’m not because it doesn’t bother me at

all’ (Louise, 16).

There was also a sense that some partici-

pants declined surgical interventions because

of a fear of treatment failure.

‘There’s always chance it could go really wrong

…and then like going back to school if that had

happened, everyone’d know you’d had plastic sur-

gery on your nose and now it had gone all wrong’

(Sara, 15).

‘They wanted to do another operation, I forgot what

it’s called, something about my voice, cause my

speech therapist said, it were her idea but I had

it done a few years ago and it didn’t work so I didn’t

really see the point in doing it again cause I

didn’t want to go through the pain again in case it

didn’t work again… and they might just be wasting

my time and their time’ (Hannah, 13).

Although some participants regarded them-

selves as part of the process, the tripartite nat-

ure of decisions was acknowledged by others.


Treatment options were seen to involve

clinicians, the patient, and the patient’s par-

ents or guardians. For example, when Heidi

had undergone a bone graft, she commented

that the decision for this was made by ‘the

consultant, my mum and myself, my mum obvi-

ously had to give her consent’.

Passive roles

In some cases, children’s discussions about

their choices appeared to reflect a passive

role. Four participants (aged 8, 10, 13, and

15 years) placed professionals at the top of

the hierarchy, followed by themselves and

their parents, whereas two (aged 9 and

16 years) indicated that they were at the bot-

tom, and their parents and professionals were

ahead of them. Further discussion around

their diagrams revealed that participants

considered adults to be experts on matters

relating to treatment.

‘I have a say if I want to have a say but I just want

to leave it all up to them [her parents] because they

read up on it. I just leave it to them’ (Gabriella,

16).

Furthermore, while policy might regard

children’s active involvement as an act of

empowerment, it may be associated with

burdens and responsibilities for young patients.

‘They always ask me. I’m like ‘what do you always

pick on me for, can’t you pick on somebody else like

me mum’ (Chloe, 15).

Fluid nature of involvement

Participants’ roles and those of their parents

were, however, contingent on the different

nature of the treatment involved. Some older

participants reported attending routine ortho-

dontic appointments by themselves, in con-

trast to visits to the multidisciplinary cleft

clinic which families attended together

because of the likelihood of having to make

important decisions.

It should be noted that children’s roles

are not necessarily passive or active. They




may be passive and active simultaneously,

particularly with relation to different aspects

of treatment. The cleft lip and palate care

pathway consists of both essential and non-

essential interventions, which largely dictate

whether or not there is any choice regarding

treatments. Functional procedures tend not to

be optional. For example, primary lip and ⁄or

palate surgery is generally regarded as essen-

tial, whereas a rhinoplasty, in the interests of

aesthetic appearance, is not a necessity. When

a baby is born and diagnosed with cleft, it is

the parent’s decision as to whether treatment

is carried out; the baby cannot express its

wishes. Furthermore, the severe impact that

cleft has on function (for example, speech)

and also appearance, means that the initial

operation to repair the lip and ⁄or the palate is

usually carried out without question. Heidi,

who considered some of the interventions she

had experienced later on in the pathway to

be a matter of choice, had said of the initial

lip repair: ‘I mean obviously the first one, I’d got

to, it’d be a bit dodgy if you didn’t have that done,

but the rest of em [were a choice]’ (Heidi, 16). It

can be seen, therefore, that the degree of

involvement of children and young people’s

involvement in the treatment pathway is

fluid: it alters according to age or the nature

of treatment. Different levels of decision are

required, and while a young person may feel

able to decide on orthodontic treatment, they

may require greater support when it came to

surgical interventions. By the final stages of

the pathway, a patient has become an adult,

able to express their own view and have this

taken into account. Adam, aged 16, moved

away from allowing his parents to dominate

discussions and towards taking the lead him-

self, which he attributed to age, or more

pertinently, to experience:

‘When I were younger, my parents would say a lot,

and I’d talk to them away from people but when I

got a lot older, it didn’t phase me too much asking

questions’ (Adam, 16).

‘I have the most say, well now I do anyway,

my mum and dad would be next I think’ (Elaine,

17).



Younger patients speculated that that their

participation in treatment decisions would

increase as they got older, which suggests a

perception that age and the capacity to make

decisions are closely inter-related:

‘They kind of do all the talking, then eventually in

time I think, the doctor will start asking me a bit

more questions, stuff like that…I don’t think I’m

old enough to decide yet for myself…probably when

I’m after 16. Well that’s what my mum and dad

say anyway…that’s fine’ (Hannah, 13).

Of course, there remained a role for par-

ents. Sara expected that she would require

her parents’ support in the future:

‘Probably still go with my mum, because it’s just

something like support as well, even though like

nothing major will happen’ (Sara, 15).

Bradley’s narrative described the time when

he ceased to be solely subject to decisions,

but became actively involved himself. He was

due to undergo surgery to close the hole from

his nasogastric tube and was offered surgery

to close the pits at the side of his lips at the

same time:

‘The only big decisions I had in operations was the

one about the lip because I thought to myself, they’re

not really a bother to me, but you see it’s just while

they’re doing it, just to help, just to get everything

done, they might as well do it, so I said yes…That

was quite a big decision to me, I wasn’t particularly

expecting it, because they only said to my mum that

they might give me a choice of whether I want my

lip doing when we were there, so it wasn’t planned

to actually do my lips. And it just suddenly came up

that they might as well do it while they were at it at

me’ (Bradley, 10).

Other forms of participation

Children’s participation in their care was not

limited to formal assent to periodic interven-

tions as other examples of active participation

were identified. Participation in treatment

may be demonstrated by compliance. For

example, an orthodontist can issue a retainer,


6 M. Hall et al.

but they cannot enforce its wear away from

the clinic.

‘I had brace treatment which I should still be wear-

ing a retainer but I don’t now on a night… I can

get the top one in, I can’t get the bottom one in… If

it went in, I’d wear it every now and again, but it

don’t go in’ (Heidi, 16).

Clinicians undoubtedly play a significant

role in altering an individual’s appearance,

through orthodontics and revision surgery.

Children’s accounts, however, revealed that

they too employed measures to change

their appearance. Participants demonstrated

how they presented themselves in a manner

that they felt ‘played down’ aspects of

their appearance. This might involve putting

extra efforts into appearance and this

corresponds with the notion that individuals

work on themselves to conceal illness or

disease.15

‘I don’t get bullied or anything but I sometimes feel

that because I’ve got cleft lip and palate, I need to

wear make-up and nice clothes, not to fit in, to make

myself feel better’ (Hannah, 13).

‘…me and my friends just take pictures all the

time…and my picture’s always from this side [her

right] and I always say to my self this is my better

side because of my nose on this side’ (Sara, 15).

‘My lip’s a lot more not noticeable when I’m smil-

ing, so I prefer to smile than frown cause it’s a lot

more noticeable when I frown’ (Heidi, 16).

Child–adult relations in the cleft care pathway

A further key theme identified by the data

was the nature of child–adult relations. It

became apparent that, even where an ele-

ment of choice over treatment was offered

to participants, some considered there to be

a difference between theory and reality. For

example, Ellen said of her orthodontic treat-

ment: ‘I did [have a say], but I suppose I had

to have them [the braces] anyway. I had to’.


When asked if she had been able to have

declined this, she responded, ‘I could but I

probably would have had to have them later

anyway’. Furthermore, although Hannah felt

involved in her treatment and placed herself

ahead of her clinicians in her treatment hier-

archy, some cynicism was apparent in her

narrative, although she felt their intentions

were good:

‘They do ask me what I want. So I do feel involved

in a way. But in a way, they ask me what I want,

but if I, whatever I say, they still do what they want

anyway. But I know they’re only doing it for my

good ‘cause they wouldn’t do it otherwise would

they?’ (Hannah, 13).

There was evidence that some felt able to

be vocal at their appointments, for example,

in clarifying details about treatment:

‘I ask questions about my actual operation. Like

what’s gonna happen and all that lot. Like I ask

questions if I don’t understand something or if I just

wanna know what’s gonna happen. I can’t remem-

ber what I ask now, but I ask them things I want to

know really if it just pops into my mind and I just

want to find out, I ask them’ (Heidi, 16).

‘I tell them how I feel and if I’m okay with what

they’re doing and if I’m not, tell em. And they

explain stuff to me that I don’t understand, so what-

ever really’ (Hannah, 13).

‘When I go in November, I know what I want to

say, like I’ll ask the plastic surgeon what it will be,

what he thinks, what their views are’ (Sara, 15).

For some patients, the opportunity to ask

questions was offered during attendance at

the multidisciplinary cleft clinic. At Sheffield

dental hospital, the child and their parents

meet all clinicians involved in their care in

the same room (other centres operate differ-

ent systems, for example, speaking with each

clinician on a one-to-one basis). The current

system may or may not present the easiest

forum in which to feel comfortable about

asking questions.




For 13-year-old Ellen, the onus to ask ques-

tions was on her mum at these appointments,

perhaps because she was shy or preferred her

mum to talk: ‘He talks to my mum loads and

asks me some questions’. It may, therefore, be

deduced that Ellen made an active decision to

assume a passive role.

The level of trust children placed in adults

was apparent, both in their families and in

health professionals. It would appear that

when it came to treatment, professionals and

parents were deemed best placed to make

treatment decisions because they ‘know best’

and have their interests at heart:

‘They know what I want…they know what’s best

…I’ve never heard them say something where I’ve

disagreed with apart from when they had to take

my teeth out and I disagreed then briefly’ (Louise,

16).

‘My last operation, I didn’t want it doing, and they

said I had to have it done. I know I should have had

it and I would have had it done anyway but they

like I’m only a child really aren’t I, even though

I’m mature and everything? But they’re my parents

and they know what’s best for me really don’t

they?’ (Hannah, 13).

Discussion

Key findings

The findings from this study highlight the

considerable individual variation for participa-

tion in the cleft lip and palate care pathway.

Some children and young people were very

active in their participation in the care path-

way, whereas others preferred their parents

to make decisions or speak on their behalf.

The nature of the treatment sometimes influ-

enced this dynamic, for example, participants

actively chose to undergo orthodontic treat-

ment but required more support when it

came to decisions about surgical interven-

tions. Policy advocates the inclusion of chil-

dren in decisions regarding their healthcare,16

and this study found clear evidence of this

within the cleft care pathway. Some children,



however, did state that the format of the

multidisciplinary clinic was daunting, which

may have inhibited them from speaking out.

The findings are also in line with guidelines

produced by the British Society of Paediatric

Dentistry, which highlight the importance of

seeking children’s assent to treatment, where

they are deemed competent.17 The Clinical

Standards Advisory Group recommendations

on cleft treatment have yet to outline an

active role for children in decision-making,

although future reports may address this

aspect.18

Study design

The main strength of this study was that it

took a qualitative, child-centred approach to

involving young people with cleft lip and pal-

ate, which has, to date, been largely absent

from the field. The use of participatory activi-

ties was found to facilitate discussions, but

interestingly, was favoured to varying degrees

by participants.

An acknowledged limitation, however, was

that the sample was self-selected and partici-

pants had a wide age range. Notably, there

was no representation from children from

ethnic minority groups, which may mean the

findings are not applicable to all populations.

A recent pilot study, which sought to identify

which factors may contribute to families of

children with clefts agreeing to participate in

a gene bank programme, also highlighted that

their participants were predominantly of

White British origin.19 It is interesting to

speculate why some children and their fami-

lies declined to participate in this study. There

may be cultural factors that are barriers to

talking about personal issues to a relative

stranger or having them in their house.

Greater insight is needed into the cultural

and social sensitivities that may influence

study participation so that wider representa-

tion can be sought in cleft-related research.

The self-selected nature of the sample does

have implications for the research findings.

The study obviously only included those who

were prepared to discuss their experiences of

treatment, and perhaps, therefore, they were

individuals who were more accepting of


8 M. Hall et al.

having a cleft or who identified with it. Thus,

the perspectives of those not willing to discuss

treatment, perhaps because they found it dis-

tressing or wished to forget about it, were not

heard.

Despite the recognised problem of represen-

tation, because the study is the first of its

kind, it does provide an excellent starting

point for an insight into children’s involve-

ment in the cleft pathway. It also provides a

foundation for future studies to look at spe-

cific aspects of treatment. For example, this

research did not include any young people

who had received orthognathic treatment; a

study of such experiences could add greatly

to knowledge on decision-making as adoles-

cents move into adulthood. Other investiga-

tors would concur that there is a need for

more qualitative research to be undertaken

with young people with craniofacial condi-

tions.20

Clinical implications

The existing literature has increasingly ques-

tioned the exclusion of children from deci-

sion-making processes and the privileges that

adults are afforded in making assumptions

about children’s capabilities. Children are

often exempt from making important deci-

sions, which entail remembering and weigh-

ing up risks and benefits, because adults

assume that they are incapable of doing so.21

The data from this study challenge this notion

as they have demonstrated that children and

young people do make important decisions,

such as agreeing to, or declining, surgical pro-

cedures. Within the cleft care pathway, how-

ever, it would seem that these opportunities

become more abundant with increasing age.

For example, the decision to undergo ortho-

gnathic surgery usually presents after the age

of 18 years when a young person may legally

make their own decisions but may still prefer

support to help them in this. This study also

highlighted the fact that treatment decisions

may be carried out in the context of an adult

medical arena, which may inhibit young

people to speak out.

UK policy, such as the National Service

Framework for Children and Young People11


and ‘Achieving Excellence and Equity for

Children’,22 advocates the involvement of

children in decisions regarding their health-

care stating there should be ‘no decision

about me without me’. The notion that chil-

dren are able to manage their own health

has been well established by previous author-

ities,4,23 some will want to be involved,24

although not all.21 The data from this study

would concur and strongly oppose a univer-

sal model, which treats all children as the

same. Some children will want to make some

decisions regarding their treatment, but they

may prefer their parents to take the lead in

other choices. Clinicians should strive to lis-

ten to children’s voices, giving them the

opportunity to make active decisions where

they wish to, and be supported by their par-

ents if desired.

The potential impact of involving children

in clinical decision-making has yet to be

fully explored in the dental literature. It is

speculated that patient satisfaction and com-

pliance may be influenced by the degree to

which young people are involved in treat-

ment decisions. This presents an interesting,

and clinically important, area for future

enquiry.

Conclusion

This article highlights the merit of undertak-

ing direct research with children who have

experience of the cleft lip and palate care

pathway. It reveals how children, their fam-

ilies, and clinicians all inter-relate in coming

to treatment decisions and demonstrates that

children are able to participate in their

treatment, if they wish. The research adds

credence to the contribution young patients

can make about their own treatment

choices.

Why this article is important to paediatric dentistry

edi

d It highlights the need for clinicians to give children

the opportunity to make treatment decisions in a sup-

portive environment.d It provides a range of perspectives of how young peo-

ple and their families reach important decisions about

cleft-related interventions.


atric Dentistry � 2012 BSPD, IAPD and Blackwell Publishing Ltd


Acknowledgements

Thanks are given to the Sheffield Cleft Team,

especially Melanie Stern, Consultant Ortho-

dontist, for support and advice throughout

this study.

Conflict of interest

The authors declare no conflict of interest.

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Children’s experiences of participation in the cleft lip and palate care pathway

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Transcript of Children’s experiences of participation in the cleft lip and palate care pathway