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DOI: 10.1111/j.1365-263X.2011.01214.x
palate care pathway
Children’s experiences of participation in the cleft lip andMELANIE 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,
� 2012 The Authors
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).
� 2012 The Authors
International Journal of Paediatric Dentistry � 2012 BSPD, IAPD and Bla
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.
International Journal of Pa
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
� 2012 The Authors
ediatric Dentistry � 2012 BSPD, IAPD and Blackwell Publishing Ltd
Participation in the cleft lip and palate care pathway 5
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).
� 2012 The Authors
International Journal of Paediatric Dentistry � 2012 BSPD, IAPD and Bla
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,
ckwell Publishing Ltd
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’.
International Journal of Pa
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.
� 2012 The Authors
ediatric Dentistry � 2012 BSPD, IAPD and Blackwell Publishing Ltd
Participation in the cleft lip and palate care pathway 7
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,
� 2012 The Authors
International Journal of Paediatric Dentistry � 2012 BSPD, IAPD and Bla
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
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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
International Journal of Pa
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.
� 2012 The Authors
atric Dentistry � 2012 BSPD, IAPD and Blackwell Publishing Ltd
Participation in the cleft lip and palate care pathway 9
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.
References
1 Slator R, Russell J, Bridges M, Tomlinson J, Cole A,
Morton J. Understanding cleft lip and palate 1: an
overview. J Fam Health Care 2009; 19: 101–103.
2 Craig G. Children’s participation through
community development: assessing the lessons
through international experience. In: Hallett C,
Prout A. (eds). Hearing the Voices of Children: Social
Policy for a New Century. London: Routledge Falmer,
2003: 38–56.
3 Marshman Z, Hall M. Oral health research with
children. Int J Paediatr Dent 2008; 18: 235–242.
4 James A. Children, health and illness. In: Field D,
Taylor S. (eds). Sociological Perspectives on Health, Illness
and Health Care. Oxford: Blackwell, 1998: 97–114.
5 Forsner M, Jansson L, Soerlie V. Being ill as
narrated by children aged 11–18 years. J Child Health
Care 2005; 9: 314–323.
6 Alderson P, Morrow V. Ethics, Social Research and
Consulting with Children and Young People. Ilford:
Barnardos, 2004.
7 James A, Jenks C, Prout A. Theorising Childhood.
Cambridge: Polity Press, 1998.
8 Bluebond-Langner M, Lask B, Angst D. Psychosocial
Aspects of Cystic Fibrosis. London: Arnold Publishers,
NY: Oxford University Press, 2001.
9 Alderson P. Children’s Consent to Surgery.
Buckingham: Open University Press, 1993.
10 Marshman Z, Gibson BJ, Owens J et al. Seen but
not heard. A systematic review of the place of the
child in 21 st century dental research. Int J Paediatr
Dent 2007; 17: 320–327.
� 2012 The Authors
International Journal of Paediatric Dentistry � 2012 BSPD, IAPD and Bla
11 Department of Health. National Service Framework
for Children, Young People and Maternity Services.
Available at: http://www.dh.gov.uk/PolicyAndGovernance
/HealthAndSocialCareTopics/Children’sServices/fs/
en, Accessed: 29 September 2010.
12 Christensen P, James A (eds). Research with Children.
London: Falmer, 2000.
13 Punch S. Research with children: the same or
different as research with adults? Childhood 2002; 9:
321–344.
14 Department of Health. Healthy Lives, Brighter Futures.
London: The Stationary Office, 2009.
15 James A. Embodied being(s): understanding the
body and the self in childhood. In: Prout A. (ed.).
The Body, Childhood and Society. Basingstoke:
Macmillan Press Ltd, 2000: 19–37.
16 Alderson P. Young Children’s Rights: Exploring Beliefs
Principles and Practices. London: Jessica Kingsley
Publishers, 2000.
17 Nunn J, Foster M, Master S, Greening S. British
Society of Paediatric Dentistry: a policy document
on consent and the use of physical intervention in
the dental care of children. Int J Paediatr Dent 2008;
18: 39–46.
18 CSAG Committee. Cleft Lip and ⁄ or Palate: Report of a
CSAG Committee. Chaired by Professor John Murray,
London: Her Majesty’s Stationary Office, 1998.
19 Williams LR, Dures E, Waylen A, Ireland T, Rumsey
NJ, Sandy JR. Approaching parents to take part in a
cleft gene bank: a qualitative pilot study. Cleft Palate
Craniofac J 2011; [Epub ahead of print].
20 Nelson P. Qualitative approaches in craniofacial
research. Cleft-Palate Craniofac J 2009; 46: 245–251.
21 Alderson P, Montgomery J. Health Care Choices:
Making Decisions with Children. London: IPPR, 1996.
22 Department of Health. Achieving Excellence and Equity
for Children. London: Department of Health, 2010.
23 Mouradian WE. Making decisions for children. Angle
Orthod 1999; 69: 300–305.
24 Adewumi A, Hector MP, King JM. Children and
informed consent: a study of children’s perceptions
and involvement in consent to dental treatment. Br
Dent J, 2001; 5: 256–259.
ckwell Publishing Ltd