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Guidelines for the transition from child to adult cystic fibrosis care

Article  in  Nursing Children and Young People · June 2013

DOI: 10.7748/ncyp2013.06.25.5.29.e175 · Source: PubMed

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 Art & science | research
Guidelines for the transition from
child to adult cystic fibrosis care
Evidence suggests that nurses require improved
guidance on how to help transfer young patients
with this condition to adult healthcare services
Correspondence
n.al-yateem1@nuigalway.ie Abstract
Nabeel Al-Yateem is research Aim To develop relevant and feasible guidelines
student, School of Nursing and
Midwifery, Áras Moyola,
for transition care, based on the perspectives of
National University of Ireland, stakeholders.
Galway Methods A sequential exploratory mixed method
Date of submission
design: the first, qualitative phase used focus group
June 11 2012 interviews with healthcare professionals. The second,
quantitative phase used a questionnaire, based on
Date of acceptance
January 10 2013
the results of the interviews, to survey a larger sample
of adolescent clients and healthcare professionals.
Peer review Findings The group interviews recommended
This article has been subject
to open peer review and
a systematic approach to transition care, in an
has been checked using environment appropriate to each individual’s stage of
antiplagiarism software development, and training of healthcare professionals
Author guidelines
in issues related to adolescence and the transition
www.nursingchildrenand process. Survey participants agreed on the relevance
youngpeople.co.uk and feasibility of 36 of the guidelines extracted from
the interviews.
Conclusion The proposed guidelines reflect the
elements of care essential to a secure transition from
child to adult health services. They go some way to
meeting the diverse needs of young people living with
a chronic life-limiting illness.
Keywords
Adolescents, cystic fibrosis, healthcare interventions,
respiratory health, transition
THE EFFECTS of cystic fibrosis (CF) and other
chronic illnesses on child, adolescent and adult life
– such as physical disability, delayed development
and reduced social and financial achievement – are
well documented in the literature (Grootenhuis et al
2006, Stam et al 2006, Maggs et al 2008). These
effects can be more marked during periods of
transition, such as adolescence, when the need to
NURSING CHILDREN AND YOUNG PEOPLE June 2013 | Volume 25 | Number 5 29
NCYP JUNE 2013 29-34.indd 29
move to a new adult CF treatment centre arises
(McEwan et al 2004, Stam et al 2006, Rhee et al
2007). During these transition periods, clients with
CF will have differing needs and different healthcare
tasks will need to be accomplished.
Healthcare interventions during these times
should be derived from an understanding of the
transition process and the experiences and needs
of children, young people and their families
(Meleis et al 2000, 2010).
The literature in Ireland (Al-Yateem 2012) and
internationally (Brumfield and Lansbury 2004,
Reiss et al 2005, Tuchman et al 2010) has discerned
the needs of adolescents during this move to adult
care. However, there is a lack of clear guidance for
healthcare professionals about what interventions
are most appropriate at this point, the way
these should be implemented and their timing –
among other important practical considerations
(Lotstein et al 2009, Rutishauser et al 2010,
Tuchman et al 2010, Towns and Bell 2011).
The need for a responsive healthcare service for
young people with CF during transition is especially
acute in Ireland, which has the highest incidence of
CF in the world (World Health Organization 2004,
Cystic Fibrosis Registry of Ireland 2007), and where
the service is still reported as being underdeveloped
and needing significant improvement (Pollock 2005,
Radio and Television Eire 2007, 2008, Health Service
Executive 2009, Al-Yateem 2012).
Aim
The research was to be used to develop guidelines
for the transition of young people with CF in Ireland
that are relevant and feasible, and based on the
perspectives of children and young adults with
CF, their parents and healthcare professionals.
31/05/2013 16:56
 Art & science | research
Figure 1 Development of questionnaire items
Questionnaire
From the literature Focus group interview
Item
Identified need Finding
Healthcare professionals
Young adults with Healthcare professionals
should assess the young
cystic fibrosis reported should assess young people’s
person’s understanding
lack of understanding understanding of the transition
of what is required
of the transition process and information
from him/her during the
process provision should be improved
transition process
Method
Design A sequential, exploratory, mixed-method
design was favoured. In the first, qualitative phase,
group interviews among healthcare professionals
(HCPs) who provide the transition service for young
people with CF were carried out. During these group
interviews, the HCPs were consulted about the best
interventions to address the needs of adolescents
with CF, as reported in a previous study carried out
by Al-Yateem (2012). In the second, quantitative
phase, a transition service survey questionnaire
was derived from the results of the first phase. This
survey was then administered to a large number of
transition service stakeholders in Ireland, to help
identify a set of relevant and feasible transition
service guidelines.
Study participants, settings and procedures The
study recruited HCPs working with adolescents with
CF during their transition from child to adult health
care, covering more than two years. All HCPs in the
Figure 2 Content validity testing process
Items that received a four rating (relevant) from five of the six experts
were considered valid items
Items that received a rating of less than four from two or more experts
were dealt with as follows:
The mean value of the scores was calculated. If the mean score was
three or more, the item was revised based on the available comments
from the experts. If the mean score was less than three, the item was
considered invalid
The content validity index for the instrument was calculated based on the
proportion of the items that received a rating of three or four divided by
the overall number of items
30 June 2013 | Volume 25 | Number 5
NCYP JUNE 2013 29-34.indd 30
environments where the group interviews took place
were invited to participate. For the survey, all young
people with CF (n=215) and their HCPs (n=108) from
all over Ireland were invited. This research project
was entirely funded by the researcher as part of
his studies.
The two focus groups met in the largest two child
and adult CF centres in Ireland. The group interviews
took place between February and March 2012. The
HCPs were invited to participate by a postal letter.
The interviews were held in conference rooms in
both settings and were audio recorded. Each meeting
lasted approximately 60 minutes. The transitional
needs of adolescents with CF, identified from
Al-Yateem (2012), were discussed, contributions
were analysed and proposed interventions were
extracted. Every suggested proposal formed
an individual item in the questionnaire to be
administered in the subsequent survey (Figure 1).
Each item was scored for relevance and
feasibility. A content validity enquiry was then
sent to an expert panel of ten HCPs who had
been working in the field for more than ten years.
These separately rated the items for clarity and
relevance. Experts on the panel were in no other
way involved in the study. In accordance with the
six replies, irrelevant items were deleted and the
content validity index for the survey questionnaire
was calculated (0.91). Figure 2 presents the content
validity testing process.
The finalised questionnaire was posted to all
potential survey participants after gaining their
contact details from the records of the hospital
CF departments.
Ethical considerations No one governing body
could grant ethical approval to a multicentre study,
so approval was obtained from all participating CF
centres separately. The personal data of all the HCPs
interviewed and young people responding were
coded to maintain confidentiality and anonymity.
The codes and recordings were stored in a secure
location and destroyed at the end of the study.
Data analysis The analysis of transcribed group
interview data followed Krueger’s (1998) systematic
approach (Figure 3). Quantitative data were
statistically analysed – where percentages were the
main measures used, they represented the majority
of the participants’ positions from the relevancy and
the feasibility of the suggested guidelines.
Findings
Focus groups Analysis of the group interviews
generated five themes and four categories (Figure 4).
NURSING CHILDREN AND YOUNG PEOPLE
31/05/2013 16:56
 Figure 3 Qualitative data analysis
Relevant statements in the Similar statements were gathered
transcripts were highlighted and combined into categories
Adapted from Krueger (1998)
Theme: an individualised comprehensive approach
Acknowledging that all young people with CF had
different needs to be met and different physical and
psychosocial contexts, participants in the group
interviews suggested a systematic approach that
considered every adolescent as an individual case.
This was expressed by one HCP who said:
‘Absolutely, we should have an individualised
comprehensive approach that cares about each
individual separately and meets their needs’
(Participant 1).
The transition service should be divided into
assessment, care planning, provision of information
and mechanisms for continuous evaluation and
follow up. Assessment should include identifying
the needs of each person and the factors that might
affect transition. One participant stated:
‘The assessment will highlight to us what the
adolescents actually need, and what might affect his
or her transition in terms of information, family, or
any other issues’ (Participant 2).
Other factors to be discerned would be the young
people’s understanding of the transition process;
the type of information needed by them and their
families; the presence of special needs or illnesses;
the presence of family support; the presence of
other transitions or changes taking place at the same
time; the external environment during the transition.
Care planning should include specific
interventions targeted at the specific needs of the
individual. According to one HCP:
‘It will be good for everyone [planning]
adolescent, parents, and even us… everybody will
know what to do’ (Participant 7).
The care plan should reflect: the person’s
own future wishes and goals (for example, study,
career); which treatment centre might be the most
appropriate and convenient to attend; any action
that might help the adolescent take this decision
later on; and any special arrangements that might
optimise patient experience and benefits from the
clinic and encourage attendance. There should
be an early start and consistent adherence to the
transition plan and agreed time frame. This is
especially relevant for the HCP group, who are
mainly responsible for implementation.
Information based on the unique needs of
NURSING CHILDREN AND YOUNG PEOPLE
NCYP JUNE 2013 29-34.indd 31
Similar categories merged under
one heading or theme
each individual should be delivered in a format
appropriate to the person’s age and developmental
stage, separately from other clinic activities and
supplemented with extra printed or digital material.
One participant commented:
‘Anyway, providing information should be given
extra attention, and possibly information sessions
could solve this problem’ (Participant 4).
The main goals of continuous evaluation were
seen as measuring: the effectiveness of care; the
progress of the young person’s knowledge, for
example CF symptoms, treatment and effects
on life, and skills, for example communication,
management of care and decision making, necessary
for transition; clinic attendance; and settlement into
the new environment.
One concluded: ‘Based on the transition plan you
can later on evaluate whether the child has made
any progress, or any further intervention might be
needed’ (Participant 5).
Category: promoting adolescent independence
Transition care should empower and encourage
young clients to participate in and manage their own
care. If this was delayed until after the transition,
adolescents might not be able to cope in the new
setting, and this could expose them to health risks.
According to one participant:
‘I think it is important to keep them involved …
and take part in all decisions and activities during
clinic and so on’ (Participant 8).
Figure 4 Focus group themes and categories
Themes
An individualised comprehensive approach to transitional care
Assessment of care
Planning of care
Provision of information
Continuous evaluation and follow-up mechanisms
Categories
An approach that promotes independence
A gradual and thorough handover to the adult setting
Creating a suitable environment for young people
Continuous training for healthcare professionals
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 Art & science | research
Category: gradual handover to the adult service
Gradual and thorough handover to the adult
hospital could make transitions much easier; it
was suggested that a period of overlap between
the two healthcare settings – of varying duration
depending on the patient – would achieve this.
During this handover, young people could
practise skills that would prepare them for
transition, for example skills in communication,
independence, decision making and competence
in CF management, and the adult healthcare
providers could carry out adult-style clinics in the
children’s setting.
‘I think staff from the ... hospital can come over
here and do their first few clinics with adolescents…
this might help… and we can give them better
information about our patients’ (Participant 10).
Category: creating a suitable environment Transition
care should be provided in an environment suited
to the unique developmental stage of each person
such as in clinics for young people with CF or by
using adolescent-specific educational materials,
videos, games, DVDs, and not oriented specifically to
children or to adults.
One said: ‘Here, the adolescents do not feel
attracted to the place… they sometimes tell us they
feel like kids here… they are waiting to get out of
here’ (Participant 16).
Category: continuous training for healthcare
professionals Training for HCPs themselves on
issues specific to adolescent developmental stages,
communication and transition should be continuous.
Communication in particular needed addressing
urgently. One participant reported:
‘I think we are used to dealing with kids more,
and indeed adolescents, being in a different and
unique developmental stage, may need another type
of communication style, that we are not used to’
(Participant 2).
Figure 5 Demographic data for healthcare professionals in the survey
Healthcare professional demographics
Specialty
Setting
Doctors: n=13
Experience Children cystic fibrosis
Nurses: n=17
2-5 years: n=5 setting: n=26
Social workers: n=7
5-10 years: n=15 Adult cystic fibrosis setting:
Dietitians: n=7
>10 years: n=38 n=13
Physiotherapists: n=6
Both: n=19
Psychologists: n=8
32 June 2013 | Volume 25 | Number 5
NCYP JUNE 2013 29-34.indd 32
Survey results Of the invited 108 HCPs caring
for young people with CF, 58 responded; and
of 215 young service users with CF who were
contacted, 113 responded. Figure 5 presents
the demographic characteristics of HCP survey
participants. The CF patient sample included those
who were either candidates for transition to the
adult setting (n=64) or those who had transferred to
an adult centre within the past two years (n=49).
Items in the survey were considered for inclusion
in the proposed transition service guidelines if
they received a rating of four (highly important
or highly feasible) or three (important or feasible)
from the expert reviewers. Inclusion criteria were
met by 36 items and these concerned: assessment
of care (16 items); planning of care (4); continuous
evaluation of care (7); provision of information
(5); promotion of independence (2); and follow-up
mechanisms and training of HCPs (2). Box 1 details
these results.
Discussion
Irish literature (Al-Yateem 2012) and international
literature (Reiss et al 2005, Lotstein et al 2009),
Tuchman et al 2010, Towns and Bell 2011) highlight
a continued failure to address transition care
for adolescents with CF. Commonly healthcare
interventions used during transition are not suitable
for the process, and could leave adolescents lacking
support, tools and skills to accomplish the change
(Nixon et al 2003, Rutishauser et al 2010). This study
revealed that the reported needs of adolescents with
CF during this time can be addressed considering
the following strategies:
■■ A systematic approach to transitional care.
■■ An individualised, needs-based method of
transitional care.
■■ Sharing knowledge and information.
■■ Training for HCPs.
A systematic approach to transitional care
To accomplish a competent, smooth transition,
young people need to achieve independent
self-management and decision making that will
enable them to navigate the differing aspects of
the services. A structured programme while in
the children’s setting for transition would help
adolescents with CF to acquire these skills and
to complete the change successfully and could
improve outcomes and service-user satisfaction
(McDonagh 2005, Kralik et al 2006, Tuchman et al
2008, Meleis 2010).
The suggested systematic or structured
approach could be divided into distinct phases,
each composed of particular interventions. This
NURSING CHILDREN AND YOUNG PEOPLE
31/05/2013 16:56
 Box 1 Transition guidelines rated relevant and feasible by expert reviewers

1. Assessment of care healthcare interventions towards greater ■■ Delivered using age-appropriate

Healthcare professionals (HCPs) should
assess: the impact of other developmental
transitions, for example moving to an
independent house, starting work, starting
a relationship; health-related transitions, for
example illness, complications; organisational
transition, for example change of treatment
setting; or any other major events, for
example starting or finishing college or a
course or being discharged or admitted for
treatment, on the preparation for transition to
the adult cystic fibrosis hospital.
HCPs should assess the adolescent’s
understanding of the timing of the transition,
what is required of him or her during the
transition process, the adult CF centres that
are available for him or her to transfer to, and
of the differences in care between the child
and adult environments. HCPs should assess
any special physical, for example disability;
cultural; social, for example, separated
parents, single parent, guardians; needs, or
any additional illness to be considered during
the adolescent’s preparation for transition.
2. Planning of care
Planning for the transition should involve
the adolescent and family working with the
healthcare professionals. The individual’s
plan for the future should guide the present
relevance and effectiveness. The plan for
the future should incorporate the adolescent’s
wishes and needs, for example, educational
needs, possible work, choice of adult care
facility, or what is important to the young
person. Where possible, the individual’s
plan for the future should contain dates
and timelines for achieving the agreed
tasks and activities.
3. Evaluation of care
Healthcare professionals should observe
the gradual increase in the adolescent’s
knowledge of CF, for example, symptoms,
treatment, and skills, especially
communication, in managing his or her
own care. Healthcare professionals should
constantly seek feedback from young people,
families and other healthcare professionals
about participation in care and achievement
of the planned objectives. Healthcare
professionals in the adult setting should
evaluate whether the young adult feels
comfortable in the new environment and has
a satisfactory attendance rate at the clinic.
4. Provision of information
Information provided during the preparation
for transition should be:
■■ Tailored to every young person’s needs.
■■ Appropriate for the developmental stage.
communication techniques.
■■ Provided to and understandable to both
the young person and the family.
■■ Supplemented with helpful, accessible
printed or digital material.
5. Promotion of independence
Throughout the preparation for transition,
adolescents should be listened to, involved
and encouraged to ask questions, express
their opinions and make decisions.
Throughout their time in care, healthcare
professionals should empower young adults
and promote their independence using various
strategies, for example providing information,
considering their opinions.
6. Follow-up mechanisms and training
Healthcare professionals who are involved
in the care of young people should
receive training on issues specific to
their developmental stages, including
communication skills, developmental and
social needs, care during transitional period,
sexual health.
Follow-up mechanisms that are agreed on
between the child and adult services should
be used to ensure a safe and beneficial
post-transition period.

method would guarantee a more comprehensive,
predictable and outcome-oriented service, ease
transition and mitigate any negative psychological
effects involved, such as stress, delayed
achievement of developmental tasks and social
isolation (Moos 2002, Schmidt et al 2003, Michele
and Sawyer 2005).
In the group interviews, HCPs suggested that
most of these negative concerns were a result of
multiple organisational flaws or defective practices
and therefore could be addressed through the
new systematic approach. This strategy is in
keeping with the literature (Vanhaecht et al 2009,
Roumie et al 2011) and the recommendations of,
for example, the NHS Alliance (2004), Together for
Short Lives (2007) and the Department of Health
and Children (2010) in Ireland.
Needs-based approach of transitional care
This study acknowledges the need to review and
rearrange provision, placing young people and their
needs and circumstances at the centre and providing
a client-oriented service rather than a task-oriented
service. Such an approach ensures that adolescents
are listened to, involved in their own care and
encouraged to ask questions, express opinions and
make decisions. This should promote independence
and empowerment, improve transition outcomes
and satisfaction, and make care more relevant to
the individual. The strategy is in agreement with
evidence in the literature (Dijkstra et al 2006,
Roumie et al 2011) that reports that such an
approach can enhance a patient’s adherence to
treatment and improve outcomes.
Sharing knowledge and information Proper
exchange of information can help remove ambiguity,
decrease uncertainty, empower the service user and
their family, facilitate decision making and clarify
the future. However, there are still educational

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 Art & science | research

needs reported in the literature as unmet, in areas Conclusion

such as sexual development, relationships, aspects
of the chronic illness and the transition process
(Nixon et al 2003, Abraham and Gardner 2009,
Al-Yateem 2012).
Special attention needs to be placed on a
transition service including for more effective and
comprehensive information provision and careful
consideration of the factors that hamper this.
Training for HCPs The lack of training for HCPs in
issues related to adolescence is evidenced in the
literature (McDonagh et al 2006, Al-Yateem 2012).
To provide a competent and adolescent-friendly
service, it is crucial that HCPs understand the nature
of adolescence, and then intervene and communicate
accordingly, whether with regard to illness or to
issues in the wider social context. Adequate training
of HCPs involved in young people’s developmental
needs, for example communication skills, care
during transitional period, sexual health, was
perceived as highly important by participants in
this study.
The literature lacks clear practical guidance for HCPs
about the most appropriate interventions to address
the needs of young people with CF during transition.
These findings have suggested 36 relevant and
feasible guidelines for practice, to ensure a safe and
secure clinical transition of adolescents living with
a chronic life-limiting illness. The guidelines will be
piloted and their efficacy evaluated in a new study
that is in the planning stages.
Implications for practice
■■ The voiced needs of young adults should be
considered in their care planning and delivery.
■■ An informed, person-centred and systematic
approach will help ensure a competent transition.
Online archive
■■ The findings can be applied to transitions of young For related information, visit
our online archive of more
adults with other life-limiting illnesses.
than 7,000 articles and
■■ Healthcare managers and policymakers can search using the keywords
use the findings of this study to plan for better
standards and outcomes. Conflict of interest
None declared

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