International Journal of Nursing Studies 51 (2014) 123–135

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International Journal of Nursing Studies

journal homepage: www.elsevier.com/ijns

Review

Adolescents’ and young adults’ transition experiences when

transferring from paediatric to adult care: A qualitative
metasynthesis
Liv Fegran a,*, Elisabeth O.C. Hall b, Lisbeth Uhrenfeldt b,e, Hanne Aagaard b,d,
Mette Spliid Ludvigsen c
a
Department of Health and Nursing Science, Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway
b
Section of Nursing, Department of Public Health, Aarhus University, Aarhus, Denmark
c
Department of Renal Medicine, Aarhus University Hospital, Denmark
d
Department of Pediatrics, Aarhus University Hospital, Denmark
e
Horsens Hospital Research Unit, Horsens, Denmark

A R T I C L E I N F O A B S T R A C T

Article history: Objectives: The objective of this study was to synthesize qualitative studies of how
Received 28 June 2012 adolescents and young adults with chronic diseases experience the transition from
Received in revised form 28 January 2013 paediatric to adult hospital care.
Accepted 3 February 2013
Design: The review is designed as a qualitative metasynthesis and is following
Sandelowski and Barroso’s guidelines for synthesizing qualitative research.
Keywords:
Data sources: Literature searches were conducted in the databases PubMed, Ovid, Scopus,
Adolescent
Cumulative Index to Nursing and Allied Health Literature (CINAHL), ISI Web of Science,
Chronic Disease
Hospital and Nordic and German databases covering the period from 1999 to November 2010. In
Metasynthesis addition, forward citation snowball searching was conducted in the databases Ovid,
Review CINAHL, ISI Web of Science, Scopus and Google Scholar.
Transfer Review methods: Of the 1143 records screened, 18 studies were included. Inclusion criteria
Transition were qualitative studies in English, German or Nordic languages on adolescents’ and young
Young adult adults’ transition experiences when transferring from paediatric to adult care. There was no
age limit, provided the focus was on the actual transfer process and participants had a
chronic somatic disease. The studies were appraised as suitable for inclusion using a
published appraisal tool. Data were analyzed into metasummaries and a metasynthesis
according to established guidelines for synthesis of qualitative research.
Results: Four themes illustrating experiences of loss of familiar surroundings and
relationships combined with insecurity and a feeling of being unprepared for what was
ahead were identified: facing changes in significant relationships, moving from a familiar to
an unknown ward culture, being prepared for transfer and achieving responsibility.
Conclusions: Young adults’ transition experiences seem to be comparable across
diagnoses. Feelings of not belonging and of being redundant during the transfer process
are striking. Health care professionals’ appreciation of young adults’ need to be
acknowledged and valued as competent collaborators in their own transfer is crucial,
and may protect them from additional health problems during a vulnerable phase. Further
research including participants across various cultures and health care systems is needed.
ß 2013 Elsevier Ltd. All rights reserved.

Abbreviations: PRANSIT, Patient Transition in Transfer.

* Corresponding author at: University of Agder, Post Box 422, NO-4604 Kristiansand, Norway. Tel.: +47 99 24 88 32.
E-mail address: Liv.fegran@uia.no (L. Fegran).

0020-7489/$ – see front matter ß 2013 Elsevier Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.ijnurstu.2013.02.001
124 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135
What is already known about the topic?
 Despite development of various transition models,
transfer from paediatric to adult ward is a challenge to
patients, families and professionals.
 Most studies are non-generic and involve small samples.
 Many studies focus on professionals’ and parents’ views
of the adolescents’ transfer.
What this paper adds
 Young adults experience the transfer from paediatric to
adult hospital ward as a logical step towards increased
responsibility.
 Feelings of not belonging and of being redundant are
striking.
 Young adults express a need to be acknowledged as
competent contributors during the transfer process.
 Further research including participants from other
cultures and health care systems is needed.
1. Introduction
Increasing numbers of adolescents with life-threaten-
ing conditions are surviving into adulthood, and conse-
quently more of them will experience transfer from
paediatric to adult hospital care (Rutishauser et al.,
2011; Tong et al., 2008). In western countries, around
10% of adolescents suffer from chronic conditions. Globally
rates seem to be up to 15% among males, rural residents,
less privileged social classes, and among adolescents living
in less educated families (Michaud et al., 2007). Transition
to adult care thus constitutes an important health care
issue (Bell and Sawyer, 2010; Hersh et al., 2009; Tuchman
et al., 2010), and facilitating transition is central for
nursing. The term transition may be used to address the
preparation period to and experiences after the event of
transfer from paediatric to adult health-care (Kennedy and
Sawyer, 2008). In this study, we understand transition as a
process constituting different natures, conditions and
patterns of response. We assume that nursing can make
a difference through preventive, promotive and interven-
tive actions (Meleis, 2010; Meleis et al., 2000).
Despite numerous recommendations during recent
decades, the transfer from paediatric to adult care
continues to pose challenges for adolescent patients (Jalkut
et al., 2009; Masding et al., 2010; McDonagh and Kelly,
2010); they often experience their transfer as disjointed,
and adjusting to transfer appears difficult (Crowley et al.,
2011). Patients as well as parents find it hard to leave the
familiar paediatric environment (Alpay, 2009; Anthony
et al., 2009; Rutishauser et al., 2011). Health-care
professionals in paediatric settings express mixed feelings
about relinquishing responsibility for patients (Clarizia
et al., 2009). Staff on adult wards is not always prepared to
receive the young patients (Peter et al., 2009; Rapley and
Davidson, 2010; Suris et al., 2009). Lugasi (2011) describe
the following issues as facilitating the transition from
child-centred to adult-centred health care: (1) presenting
transition with a positive meaning, (2) revealing and
adjusting young adults’ expectations about the transition
process, (3) empowering patients in early teenage years to
become increasingly autonomous, (4) involving young
adults in planning and preparations for transition, and
(5) having a specific person coordinating the transition
process.
Adolescence is in itself a developmental transition
(Meleis, 2010) marked by increased self-identity and
growing independence. In addition adolescents with
chronic conditions may face health-illness and situational
transitions (Meleis, 2010). They have to adjust their life to
events such as moving from school to work or from living
at home to independent living (Jurasek et al., 2010; van
Groningen et al., 2012).
Research on transfer and transition is mostly based on
surveys and other quantitative approaches. Exploring
experiences of transfer using a qualitative approach can
capture a deeper knowledge of young adults’ own
challenges. The strength of qualitative approaches is that
they explore subjective experiences that surveys do not
always catch. Qualitative studies discover patterns and
variations from which hypotheses can emerge, theories be
developed and practice informed. Most qualitative studies
addressing adolescents involved in transition from paedi-
atric to adult hospital care are disease specific and consist
of relatively small samples. An increase in qualitative
reviews of health care issues is seen (Bondas and Hall,
2007). In line with this development, the purpose of this
review was systematically to synthesize findings from
qualitative reports on how young people with various
somatic chronic conditions experienced the transfer from
paediatric to adult hospital care.
2. Methods
The review was designed as a qualitative metasynthesis
and follows Sandelowski and Barroso’s (2007) guidelines
for synthesizing qualitative research. A qualitative meta-
synthesis is a scientific inquiry with a specific focus aimed
at systematically interpreting and integrating findings in
reports of qualitative research. This metasynthesis was
conducted in five steps: formulating the purpose and
rationale, searching for and retrieving qualitative research
reports, critically appraising the included reports, classify-
ing the findings and synthesizing the findings. The
Scandinavian–German research group PRANSIT (Patient
Transition in Transfer), consisting of five nurse researchers,
completed the review as an initial phase in the develop-
ment of a planned intervention to improve patient transfer
in the health-care system (Campbell and Tracey, 2000).
2.1. Search and retrieval of qualitative research studies
A valid research synthesis depends on the comprehen-
sive retrieval of relevant qualitative reports to include in
the metasynthesis (Sandelowski and Barroso, 2007). To
fulfil the purposes of this review, studies containing
qualitative data were required to meet the following
criteria: (1) the study includes adolescents’ or young
adults’ experiences with transfer from a paediatric to an
adult ward; (2) participants have a somatic chronic
 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135 125

disease; and (3) the study is published in English, German or
a Nordic language. Systematic searches covered the period
between 1999 and November 2010, and until February 2011
reports were included through ‘‘berry picking’’ (Sande-
lowski and Barroso, 2007). Two of the authors (L.F., M.S.L.)
developed a search strategy using the key words ‘‘teenager
OR young adult OR adolescent’’ AND ‘‘chronic disease OR
special health care need’’ AND ‘‘transfer OR transition’’ AND
‘‘qualitative study OR phenomenology OR grounded theory
OR hermeneutics’’ AND ‘‘hospital OR intra-hospital’’. In
collaboration with a librarian, the search strategy was
modified to fit each database. Following the search, studies
eligible for inclusion were subject to forward chaining and
ancestry searching in reference lists. Almost 50% of the
included studies were retrieved through sources other than
the initial database search (Fig. 1), and the flow diagram was
repeatedly adjusted to reflect all steps in the inclusion
process.
2.2. Selecting and appraising studies for synthesis
Two of the authors (L.F., M.S.L.) screened titles and
abstracts and individually appraised relevant reports
following the Critical Appraisal Checklist for Interpretive
and Critical Research (The Joanna Briggs Institute, 2008).
The included reports were examined to determine
whether they met the study objective and inclusion
criteria. We evaluated congruence between aims, meth-
odology, data collection and analysis methods. We found
that most studies presented findings clearly based on the
data collected, and no report congruent with the purpose
of our study was excluded due to quality flaws (Carroll
et al., 2012; Sandelowski et al., 2012). An absolute
inclusion criterion from the appraisal checklist was ‘‘Is
the patient’s voice adequately represented?’’ The remain-
ing criterions of the appraisal tool were means to
systematically extract important issues, and guided us in
getting to know the reports’ substance. The results are
presented in Table 1 (complete results available on
request). Whether a report should be included or not
was discussed within the research group until reaching
consensus. Especially we discussed reports which were on
the fringe of the aim of the metasynthesis. Thus, reports
addressing expectations rather than experiences of trans-
fer were excluded (e.g. Anthony et al., 2009), and reports
including participants who were in the process of transfer
to adult hospital care were included (e.g. Kirk, 2008;
Tuchman et al., 2008). The literature search and appraisal

Records identified through database Additional records identified through

searching other sources
(n = 401) (n = 4)

Records after duplicates removed

(n =398)

Database search in:

Records excluded
PubMed, CINAHL, Scopus, Ovid, ISI Records screened
(n =8)
WOS, Medpilot, (n =398)
Non-English, Non-Nordic or Non-German articles
Idun.no, Norart, SweMed+, bibliotek.dk

Full-text articles excluded with reasons

(n =376)
Non transfer/non transition/non hospital
Full-text articles assessed for eligibility
Non chronic condition
(n =390)
No adolescents/no young adult’s responses
Non (primary) research articles/
questionnaire/no qualitative analysis

Studies included
(n =14)

Forward citation search in: Records identified through database

Google Scholar, Scopus, forward citation search
CINAHL, ISI WOS, Ovid (n =732)

Records after duplicates removed

(n =288)

Records screened and full-text- articles Records excluded and full-text articles excluded with reasons
assessed for eligibility (n=285)
(n= 288) Non transfer/non transition/non hospital
Additional records Non chronic condition
Additional studies included in No adolescents/no young adult’s responses
identified through
qualitative metasynthesis Non (primary) research articles/
other sources
(n =4) questionnaire/no qualitative analysis
(n=1)

Total number studies included in

metasynthesis
(n =18)
Total number of participants: 368

Fig. 1. The inclusion of studies by systematic literature search, forward citation search and other sources.
 126
Table 1
Characteristics of included studies.

First author, year Country Diagnosis Sample Method of approach Selected items from the Critical Appraisal Checklist for Interpretive and Critical
of publication of study Research (The Joanna Briggs Institute, 2008)

Congruity between Researcher located Influence of Perspectives

philosophical perspective culturally or the researcher represented
and methodology?a theoretically?b addressed?c in studyd

Braj, 1999 Canada Haemodialysis patients 3M Semi structured interview Yes No Unclear Adol/YA
Brumfield, 2004 Australia Cystic fibrosis 6 Semi structured interview Unclear Yes No Adol/YA
3 F, 3 M
Hauser, 1999 USA Sickle cell disease 22 (no gender Focus group Unclear Unclear No Adol/YA
information) Parents

L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135

Professionals
Jones, 2003 UK Diabetes 8 Semi structured interview Yes No No Adol/YA
6 F, 2 M
Kirk, 2008 UK Complex health care needs 28 Semi structured interview Unclear No No Adol/YA
11 F, 17 M
McCurdy, 2006 Canada Transplant recipients 17 Focus group Yes Yes Yes Adol/YA
3 F, 14 M Professionals
Documents
Miles, 2004 UK HIV positive 7 Semi structured interview Unclear No No Adolescents
2 F, 5 M
Moons, 2009 Belgium Congenital heart disease 14 Semi structured interview Yes Yes Yes Adol/YA
8 F, 6 M
Patterson, 1999 USA Special health care needs 7 Focus group Unclear Yes No Adol/YA
5 F, 2 M
Reiss, 2005 USA Disabilities and special 49 Other qualitative approaches Unclear No No Adol/YA
health care needs 25 F, 24 M Family
Professionals
Shaw, 2004 UK Juvenile idiopathic arthritis 30 Focus group Unclear Yes Yes Adol/YA
19 F, 11 M Parents
Soanes, 2004 UK Chronic illness 7 Semi structured interview Unclear No Unclear Adol/YA
2 F, 5 M
Stabile, 2005 USA Transplantation 24 (no gender Other qualitative approaches Unclear Yes No Adol/YA
information)
Tuchman, 2008 USA Chronic illness 22 (no gender Other qualitative approaches Unclear No No Adol/YA
information)
Valenzuela, 2009 USA Behaviourally acquired HIV 10 Semi structured interview Unclear No No Adol/YA
7 F, 3 M
Wiener, 2009 USA HIV 59 Other qualitative approaches Unclear No No Adol/YA
29 F, 30 M
Wray, 2008 UK Congenital heart disease 38 (no gender Other qualitative approaches Unclear No No Adol/YA
information)
Østlie, 2007 Norway Juvenile idiopathic arthritis 16 Focus group Unclear No Yes Adol/YA
14 F, 2 M
M, male; F, female; Adol, adolescents; YA, young adults.
a
Equivalent to question no. 1 in the Critical Appraisal Checklist for Interpretive and Critical Research (The Joanna Briggs Institute, 2008).
b
Equivalent to question no. 6 in the Critical Appraisal Checklist for Interpretive and Critical Research (The Joanna Briggs Institute, 2008).
c
Equivalent to question no. 7 in the Critical Appraisal Checklist for Interpretive and Critical Research (The Joanna Briggs Institute, 2008).
d
Equivalent to question no. 8 in the Critical Appraisal Checklist for Interpretive and Critical Research (The Joanna Briggs Institute, 2008).
Table 2
Intrastudy intensity effect sizes and interstudy frequency effect sizes of themes pertaining to young adults’ experiences of transition.

Overarching Being in limbo moving from familiar to unknown ward cultures and achieving responsibility, depend on timing of transfer and facing changes in significant relationships Intrastudy
theme intensity
Sub-theme Facing changes of significant Moving from familiar to Being prepared for transfer Achieving responsibility effect size
relationships unknown ward cultures

Categories

Authors Relationships Relationships Psycho- Different Change Need for Timing Process Indifference Owner- Independence Informa- Facilities Involve Need Communica Individual
with with peers social cultures of status continuity of of ship tion ment for tion studies’
professionals factors transfer transfer support contribution
to sub-themes

Braj, 1999 x x x 25%

L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135

(1 out of 4)
Brumfield, 2004 x x x x 50%
(2 out of 4)
Hauser, 1999 x x x x x x 75%
(3 out of 4)
Jones, 2003 x x x x 75%
(3 out of 4)
Kirk, 2008 x x x x x x x 100%
(4 out of 4)
McCurdy, 2006 x x x x x x x x 100%
(4 out of 4)
Miles, 2004 x x x x x x x 100%
(4 out of 4)
Moons, 2009 x x x x x x x x 100%
(4 out of 4)
Patterson, 1999 x x x x x x x x x x 100%
(4 out of 4)
Reiss, 2005 x x x 100%
(4 out of 4)
Shaw, 2004 x x x x x x x x 100%
(4 out of 4)
Soanes, 2004 x x x x x x x x x x 100%
(4 out of 4)
Stabile, 2005 x x x x x x x x 100%
(4 out of 4)
Tuchman, 2008 x x x x x x x x 100%
(4 out of 4)
Valenzuela, 2009 x x x x x x x x x x 100%
(4 out of 4)
Wiener, 2009 x x x x x x x 100%
(4 out of 4)
Wray, 2008 x x x x x x x x x x 100%
(4 out of 4)
Østlie, 2007 x x x x x x x 100%
(4 out of 4)

Interstudy frequency effect sizes

Representation of 89% 33% 17% 78% 44% 33% 78% 67% 17% 22% 83% 50% 11% 33% 28% 22%
subthemes in (16 out (6 out (3 out (14 out (8 out (6 out (14 out (12 out (3 out (4 out (15 out (9 out (2 out (6 out (5 out (4 out
individual studies of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18) of 18)

127
128 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135

resulted in 18 reports with a total sample of 368 Table 3

Metasummary of characteristics of included studies.
adolescents or young adults who had a somatic chronic
condition. On appraising the included studies, we found Item No. of studies
that most studies presented findings clearly based on the reporting each
item (n = 18)
data collected. The primary researchers discussed their
findings within a broader context, making conclusions and Theoretical methodological framework
suggestions for application and/or further research. Described/qualitative design? 15
Not described 3
However, descriptions of philosophical perspectives and
their influence on the findings were poorly presented. Sampling
Purposive 13
Consecutive 3
2.3. Analysis Opportunistic 1
Convenience 1
In line with Sandelowski and Barroso (2007), two
Informants other than adolescents
approaches to qualitative research synthesis were used: Yes 5
qualitative metasummaries and qualitative metasynthesis. No 13
Qualitative metasummaries are quantitatively oriented
Setting of data collection
aggregations of qualitative findings across the included Hospital area 5
studies. Qualitative metasynthesis offers novel interpreta- Participants’ home 3
tions of the target findings from the primary studies as a Telephone/postal surveys 3
whole. The target findings (Sandelowski and Barroso, No information 7

2007) to be included were quotations from young adults, Personal characteristics of interviewer/facilitator
or primary researchers’ interpretations of young adults’ Interviewers’ occupation or 15
experiences. Non-target findings were parents’ or health- education/training skills
Age 1
care professionals’ descriptions, imported findings from Reflection on personal beliefs 1
other studies, authors’ descriptions of analytical proce- No information 1
dures or discussions of findings. The target findings from
Relationship between interviewer and participants
the reports were imported and structured by the qualita- Professional relationship 5
tive analysis program NVivo9 (Edhlund, 2011). Researcher–participant relationship 4
The synthesis procedure followed Ricoeur’s (1976) Building rapport during the interviews 1
phenomenological–hermeneutic analysis: naı̈ve reading, No information 8
structural analysis and critical interpretation. First, three of Studies describing number of participants involved in
the authors (L.F., M.S.L., E.H.) performed naı̈ve readings of the recruitment process
the extracted text to obtain preliminary ideas about the Contacted 6
Meeting inclusion criteria 10
content. Next, the text was independently and interactive-
Included 18
ly read and structured into categories and themes, Refused to participate/not responding 10
constituting the main overarching theme. Finally, the Reasons for not participating/drop out 6
themes and summaries were aggregated and critically
Data collection method
interpreted. Semi-structured interview guide 15
The NVivo9 was also used to calculate the magnitude of Standardized questions 2
the extracted findings. Effect sizes provide different levels One single open data-generating question 1
of understanding of a subject matter (Onwuegbuzie, 2003). Repeated interviews
The interstudy frequency effect sizes (Table 2) indicated Yes 3
the prevalence rate of each theme, whereas the intrastudy Not described 15
intensity effect sizes (Table 2) identified the concentration Pilot testing
of findings in each report. Yes 1
Not described 17

3. Findings Data (or theoretical) saturation

Not described 18
We report the findings as metasummaries supported by Notes taken in addition to interviews
tables and figures, and as metasynthesis presented in four Yes 10
themes. Not described 8

Audio/visual recording
3.1. Metasummaries Audiotaped and transcribed verbatim 17
Recorded 1
Characteristics of the included studies are presented in Transcripts or/and analysis returned to participants
Table 1, metasummaries of characteristics of the included Yes 4
studies in Table 3, and age of participants and age at No 14
transfer in Fig. 2. Data analysis style
Independence, relationship with professionals, differ- Template analysis style 0
ences in ward cultures and process and timing of transfer Editing analysis style 18
Intuitive Immersion/crystallization analysis style 0
were the issues that received the most emphasis in the
 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135 129

Table 3 (Continued )
3.2. Metasynthesis
Item No. of studies
reporting each
The metasynthesis of adolescents’ and young adults’
item (n = 18)
experiences of transition from paediatric to adult hospital
Data coders
wards revealed that during transition they felt themselves
Research team of two or more coders 11
Not described 7
to be in a kind of limbo between different cultures. Their
experiences were synthesized into four sub-themes: facing
Use of software
changes in significant relationships, moving from a
NVivo, Atlas, Ethnograph 6
Not described 12 familiar to an unknown ward culture, being prepared for
transfer and achieving responsibility (Table 4). These sub-
themes will be elaborated in the following.
studies (Table 2). All sub-themes had an effect size of 88%,
meaning that 16 of the 18 studies were represented in each 3.2.1. Facing changes in significant relationships
theme (Table 2). No theme was over- or under-represented, Facing changes in significant relationships refers to
and all sub-themes served as the empirical basis for the descriptions of the transfer process as jumping from pillar
qualitative metasynthesis. to post, indicating the change as a feeling of letting go of

Age range at transfer

ye r ,
/
au st
o

ge
ar
th
r

A
Fi

8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35

No age at transfer described

Braj, 1999
No age at transfer described
Brumfield, 2004
No age at transfer described
Hauser, 1999

Jones, 2003
No age at transfer described
Kirk, 2008

McCurdy, 2006

Miles, 2004

Moons, 2009
No age at transfer described
Patterson, 1999

Reiss, 2005
No age at transfer described
Shaw, 2004

Soanes, 2004
No age at transfer described
Stabile, 2005 No age described

Tuchman, 2008
No age at transfer described
Valenzuela, 2009
No age at transfer described
Wiener, 2009

Wray, 2008

Østlie, 2007

Age participants Age at transfer

Fig. 2. Participants’ age range and participants’ age at transfer.

130 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135

something familiar without knowing what the future

Communication
might bring. Significant relationships were described as
crucial during this void (Reiss et al., 2005; Wiener et al.,
2009). Significant others could be professionals such as
nurses or doctors, or peers such as friends or other people

support
with chronic illness whom the adolescents or young adults

Need
met through the health services.

for
Relationships in the paediatric setting may have started

Involvement
early in life and gradually transformed into something
Being in limbo moving from familiar to unknown ward cultures and achieving responsibility, depend on timing of transfer and facing changes in significant relationships

more than a professional relationship (Kirk, 2008). The

paediatric ward developed into a second home and nurses
became like family members (Soanes and Timmons, 2004).
Facilities

The ambience in paediatric units was experienced as

informal and individual; the patients felt comfortable and
developed close relationships with the professionals
Information

(Patterson and Lanier, 1999): ‘‘The nurses had more time

to spend with you . . . just spending that real quality time
with you and just treating you like you were a real person’’
(Brumfield and Lansbury, 2004, p. 227). The connection
Independence
Achieving responsibility

with the paediatric staff sometimes continued after

transfer: ‘‘So, I left the clinic but I didn’t leave them’’
(Valenzuela et al., 2011, p. 136).
Relationships in adult hospital care were quite differ-
Ownership

ent. There, doctors and nurses were described as being

impersonal and disease-focused, and it was difficult to
establish relationships with them. The ambience in the
Indifference

adult ward was busy and superficial, sometimes leaving

the young adults with the feeling of being an obstacle: ‘‘I
Being prepared for transfer

always felt the [doctor’s] time is valuable and I’m always

wasting their time as well, so I always try and rush
transfer
Process

through’’ (Jones et al., 2003, p. 347). Despite this, the

doctors’ and nurses’ expectation that patients would take
of

care of themselves was a boost to the adolescents’ and

transfer
Timing

young adults’ self-confidence: ‘‘Basically they are pushing

of

me, but they are letting me take the steps. It’s helping me
see that I’m helping myself and it is not only them helping
continuity
Need for

me’’ (Valenzuela et al., 2011, p. 5).

to unknown ward cultures

Peers with a similar chronic disease offered crucial

Moving from familiar

support in managing life as a grown-up. Being with

Change

status

familiar people such as friends or peers was helpful

of

during the transition process, and provided opportu-

Different

nities to discuss feelings, share experiences and reduce

cultures
Metasynthesis. Overarching theme, sub-themes and categories.

anxiety:
And she says to me the same things that other people
Psycho-

factors

have been saying, but she came at it from a different

social

position, because she had been there. She wasn’t a

doctor or a nurse, or a parent, or somebody that was
Relationships
Facing changes of significant

with peers

hard for me to listen to. I could listen to her, because I

knew that she had already been there (Patterson and
Lanier, 1999, p. 51).
Relationships

professionals
relationships

Conversely, meeting older people with the same disease

was challenging, because the young people were con-
fronted with their future prognosis.
with
Overarching theme

3.2.2. Moving from a familiar to an unknown ward culture

Moving from a familiar to an unknown culture refers to
Sub-themes

the experiences of transfer from a familiar, safe children’s

Categories

ward to an unknown adult ward and, in particular,

Table 4

adapting to the cultural differences between the paediatric

and adult health-care environments:
 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135
In the paediatric unit they were surrounded with
cartoon covered walls, games, play therapists and other
children. Now they were sitting in an all-adult waiting
room covered with HIV specific posters and information
(Miles et al., 2004, p. 309).
Entering the adult ward also changed their patient
status. Whereas the paediatric professionals had treated
their health problems in collaboration with their parents,
they themselves now had to deal with, for example,
questions concerning the long-term effects of their chronic
disease:
At the paediatric centre they’d talk to the parents and
say, you must make sure your child takes medication. At
the adult centre, like they tell you the benefits of it, they
tell you what happens if you don’t take it, and leave it in
your hands so, they give you a lot of control . . . they do
talk to you like you’re an adult, it is your decision (Kirk,
2008, p. 570).
Young adults require maturity and responsibility if they
are to take care of their own health in adult care (Reiss
et al., 2005; Wiener et al., 2009). After the transfer,
scheduled follow-ups in paediatric units were transformed
into appointments that the young adults had to initiate
themselves. Some adjusted and found the new freedom
beneficial, whereas others wanted a break from disease-
focused routines and dropped out:
‘‘I was going to [paediatric care] all my life for the first
21 years, all the time,’’ said one young adult. ‘‘I kind of
got burned out on going. All the medical talk, you never
know what they are talking about ever. So now, I
basically just go to the doctor when I need something’’
(Patterson and Lanier, 1999, p. 49).
3.2.3. Being prepared for transfer
The timing of transfer based on biological age was an
issue in most of the studies. Although the age of 16 years or
so is generally viewed as an appropriate time to start
preparing for transfer, the studies suggest that the actual
time of transfer should be decided by considering age and
readiness:
Age doesn’t matter; you could have someone at 16 and
be ready for transition, or someone going towards 20
who’s not ready. I know you have to go at [some] point
but I think it should be when the young person decides
(Soanes and Timmons, 2004, p. 107).
Transfer was seen as a logic step towards adulthood,
and the process of leaving the paediatric setting could start
with adolescents’ dissociation from the younger children:
I changed at the time when I was about mid-teens . . .
and that’s when I thought, thank God I’m going to a
different clinic where it’s not as noisy with all the kids
running around . . . you just feel out of place (Brumfield
and Lansbury, 2004, p. 228).
Despite feeling ready for transfer, the young adults felt
that paediatricians continued to treat them as though they
were small children, lecturing them about medications and
compliance: ‘‘I thought. . . if only the [paediatric] doctors
131
knew that we were becoming adults, you know, we were in
our mid-teens thinking, they still treat us as if we were ten
years old.’’ (Brumfield and Lansbury, 2004, p. 228).
A sudden transfer was experienced as the most
unsatisfactory. Lack of preparedness made the adolescents
and young adults feel redundant and unwanted. They were
left ‘‘abandoned, dumped or shuffled around’’. Experienc-
ing concurrent transitions such as illness, graduation from
school, moving to a university city or leaving home was
also challenging; it was as if things were ‘‘piled up’’ on
them (Soanes and Timmons, 2004, p. 108).
Patients appreciated collaboration between the two
hospital settings, although, in their experience, continuity
of care was not always present. The adult-care provider
might have little knowledge about the transferred patient’s
condition, making the young adult worried about not
receiving the right level of care (Tuchman et al., 2008).
They tired of retelling their life story and described the
transition as being in no man’s land (Anthony et al., 2009;
Patterson and Lanier, 1999; Valenzuela et al., 2011).
3.2.4. Achieving responsibility
Achieving responsibility refers to the shift in ownership
of the disorder and self when being transferred (Wiener
et al., 2009). The young adults experienced this shift in
different ways because of their own attitudes, severity and
time of onset of their disorder, and parents’ and doctors’
incentives: ‘‘You’re kind of thrown into becoming an adult
in terms of your health, and that can be kind of scary’’
(McCurdy et al., 2006, p. 313).
Reluctance to assume responsibility could arise be-
cause, in many ways, they were still dependent on their
parents:
You’re not self-sufficient yet. You still live with your
parents. They provide and care for you and still know
everything about you. You’ve almost reached adult-
hood, but if there’s something on your mind, you still
turn to your parent (Moons et al., 2009, p. 320).
Conversely, the transfer forced movement towards
independence: ‘‘You would be embarrassed if there was an
80-year-old and you were sitting there with your mum!’’
(Soanes and Timmons, 2004, p. 109).
Meeting the expectations and challenges of becoming a
grown-up had an impact on the accountability: ‘‘I kind of
think of it as a job. I feel like I am going to work, because it
is like working, because I’m setting up my machine, take
myself off and then I leave’’ (Braj et al., 1999, p. 43).
The young people sought knowledge about their
disease and its treatment, as well as general issues such
as pregnancy, smoking, sexuality, and alcohol and drug use
(Patterson and Lanier, 1999; Østlie et al., 2007), and they
appreciated being involved in decision-making (Hauser
and Dorn, 1999; Shaw et al., 2004):
The most important thing to me when transferring to
the adult clinic was that all the decisions were made
with me involved and I was able to talk about what was
going to happen when I saw the doctors, which I never
had a chance to do in the children’s clinic (Wray and
Maynard, 2008, p. 571).
132 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135
Parents could be supportive in preparing their children
for independence by, for instance, asking whether their
presence was wanted during consultations. However,
transition could be a time of discord because of parental
reluctance to let go of their responsibility and allow the
young adult to take over (Kirk, 2008; Stabile et al., 2005):
‘‘My mom doesn’t want to let go. She has flat out told me.
You put 18 years into your child’s health and it becomes
your health as well’’ (Tuchman et al., 2008, p. 560). Some
young adults were hesitant, ready to take over full
responsibility but afraid of being considered ungrateful
by their parents:
It’s quite difficult, because my mom and dad have been
great, really supportive, but there’s times when you’ve
been going to speak up. You think I just wish I’d come on
my own. I’m like 19/20 years old now, I really don’t need
you to come and hold my hand anymore (Shaw et al.,
2004, p. 774).
4. Discussion
This metasynthesis based on 18 primary qualitative
studies offers a comprehensive understanding of how
adolescents and young adults with a broad range of
somatic chronic conditions experience the transfer from
paediatric to adult hospital wards. In a transition theory
perspective (Meleis et al., 2000), the metasynthesis also
reveal that the transfer experience is more than a change
from one ward to another. The transfer experience is
interwoven into a pattern of developmental, health-illness,
situational and organizational transition issues.
4.1. Discussion of findings
Overall, the young people appreciated the transition as
a move forward. They were ready to achieve responsibility
and be on their own; but they felt unprepared and
expressed a need for guidance and support. They also
noticed that there was a huge difference between the
wards, and the transfer thus turned out to be a time of not
belonging anywhere. The relationship with health-care
professionals changed, and the increased responsibility for
their disease management was challenging. This finding is
supported by other studies that demonstrate that cultural
differences between paediatric and adult care create
significant barriers to continuity of care in connection
with transfer (Goodhand et al., 2011; McDonagh, 2008;
van Staa et al., 2011c). From Meleis’ transition theory
perspective, our study thus calls to the attention the need
for nursing therapeutics to prevent transition ill-being and
promote transition well-being. The study identified the
time around the actual transfer as a ‘critical point’ (Meleis
et al., 2000) in the transfer process. One of several
therapeutic actions would be to discuss the ward culture
differences and adolescents’ preparedness for transfer.
The adolescents talked at length about the importance
of significant relationships with professionals, families and
friends who support them in living with a chronic
condition. They particularly emphasized the challenges
in the changing relationships with professionals. Their
previous experience of managing their chronic condition in
close collaboration with parents and paediatric health-care
professionals suddenly becomes irrelevant in the adult
setting, and their feeling of being redundant or unwanted
as collaborators is striking. These findings support research
demonstrating that, in paediatric wards, clinicians negoti-
ate treatment and care through parents with little
involvement from children (Coyne et al., 2011; Donnelly
and Kilkelly, 2011; Hallström and Elander, 2004), whereas
in adult wards, adolescents are expected to be autonomous
and independent (Hait et al., 2009). Looking through the
lens of transitions theory, the transition property engage-
ment, defined as ‘‘the degree to which a person demon-
strates involvement in the processes inherent in the
transition’’, seems relevant to address here (Meleis et al.,
2000). Both the young adults and the health professionals
should be ready to invest the necessary time and support
to prepare young adults to take responsibility for their own
health. Issues such as allowing sufficient time for
consultations, active listening by doctors and nurses and
anticipation of young adults’ involvement may positively
influence the young adults’ experience of themselves as
valuable contributors.
Loosening close relationships as part of the transfer
process is a demanding manoeuvre (Goodhand et al., 2011;
van Staa et al., 2011a). It is hard for young adults to become
independent if their parents have difficulty letting go of
their responsibility. Our finding about the challenges for
young adults in assuming responsibility for their disease
management is supported by van Staa et al.’s (2011c) study
indicating that parents of adolescents with chronic
diseases appear to be more concerned than their children
about the adolescents’ ability to be autonomous. From the
transition theory view, our study stresses the hospital
transfer as a developmental and health-illness transition
with new roles and responsibilities for the young people as
well as for their parents. The hospital transfer constitutes a
transitional health-illness event that moves the parent–
adolescent relationship towards a less parental and more
adult like family relationship.
During mid-adolescence (13–15 years), emotional
separation from parents is combined with stronger peer
identification (Christie and Viner, 2005). Support from
peers during transfer preparations, especially young
people with similar chronic conditions, may therefore
help the young adults adjust to their life as grown-ups. The
support of valued peers might be used more systematically
to facilitate transition.
Our findings about the importance of timing and
preparation for transfer in collaboration with the adoles-
cents are also supported by quantitative studies (Sawicki
et al., 2011), and promotive nursing therapeutics may
bridge the gap between paediatric and adult care (Lundin
et al., 2008; McDonagh, 2008). Wards especially designed
for adolescents give those needing hospital care the
opportunity to create their own space in the hospital
environment (Riis Olsen and Harder, 2011). Such wards
have been shown to improve care, particularly for older
adolescents (Hutton, 2010; Viner, 2007). However, profes-
sionals’ attitude is crucial irrespective of the type of ward,
and adjusting to the patients’ individual needs rather than
 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135
merely expecting them to fit in is always critical for
adolescents, regardless of their health condition (Hutton,
2008).
An interesting finding concerned the age at transfer.
Most of the studies in this metasynthesis indicate age as
the transfer parameter. However, only half of the included
studies explore the issue of age at transfer; and the
adolescents themselves cited readiness and maturity as
being more important than biological age. The onset of
preparation for transfer at 16 years seems to be appropri-
ate, while the age of 18–19 years and older is estimated as
the best time (McDonagh and Kelly, 2010). The issue of
maturity is supported by neuroscience research that
indicates that adolescent brain development extends into
the early 20s (Johnson et al., 2009; Rutishauser et al.,
2011). Care for the young adult should therefore be based
on a combination of the patient’s individual needs and
biological age (Rapley and Davidson, 2010).
The metasynthesis reveals that adolescence creates
specific challenges for people with chronic conditions. A
variety of adolescents and young adults are involved in the
transfer process, from those in middle adolescence (13–15
years), who are developing their psychosocial indepen-
dence, to those in late adolescence (16–18 years), who are
developing their personal identity, personal goals and
moral values (Goodhand et al., 2011). Health care should
include a focus on maintaining meaningful age-appropri-
ate relationships while gradually transferring responsibil-
ity from parents to the young adults (Christie and Viner,
2005; van Staa et al., 2011b,c).
According to Meleis (2010, p. 63), ‘‘knowledge is
empowering to those who develop it, those who use it
and those who benefit from it’’. Adolescence is a critical
stage in the transition to adulthood, and not being able to
live up to expectations or not being seen and heard may
cause additional stress, leading to health problems such as
depression (Dundon, 2006). Whereas successful transi-
tions create independent young adults who can manage
their situation of living with a chronic condition, failed
transitions may negatively affect young adults’ health,
leading to increased admission rates and non-adherence to
treatment recommendations (Dundon, 2006; Goodhand
et al., 2011; White, 2008).
4.2. Strengths and limitations
One limitation is that several studies were excluded
because of a lack of data on young adults’ experiences of
transfers. However, the number of eligible studies and
number of participants (n = 368) was sufficient to perform
a metasynthesis providing in-depth knowledge of young
adults’ own transition experiences. To explore transition
experiences across diagnoses, all somatic chronic condi-
tions were included. Including mental conditions might
have strengthened the study; however, this could have
reduced the transferability of findings. The study includes
reports from North America, Europe and Australia, which
in a global perspective is a narrow range to base a claim for
similarities across cultures. Studies from Asian and
African cultures and health care systems would have
given further knowledge of cultural similarities and
133
variations. The findings do not indicate that age or
gender is significant with regard to the young adults’
experiences; however, this may be more apparent in
studies with a more homogeneous selection of partici-
pants. The decision not to exclude studies with limited
descriptions of methods may be questioned; however,
the fact that data are relatively equally distributed across
the sub-themes (Table 2) strengthen the validity of
findings regardless of the methodological quality. The
relationships between participants and researchers in the
primary studies may have influenced the findings. On the
other hand, researchers’ knowledge of and relationship
with the participants may have been crucial for recruiting
participants and collecting data. Reflections on the
researchers’ role might have increased the individual
studies’ validity.
Conducting a metasynthesis as a research group
contributes to methodological development (Paterson
et al., 2009). The research group’s collaboration and efforts
in searching for data and analyzing findings is strengthen-
ing the study. In our presentation, we have endeavoured to
identify clearly the individual researchers’ contributions
and the various judgements made during the research
process.
5. Conclusion
The findings of this metasynthesis support previous
research indicating that transition is a challenging phase
for adolescents and young adults, and managing the
transition is crucial. The young adults appreciate the
move forward and the growing responsibility. However
feelings of not belonging and of being redundant are
striking. The time around the transfer is a critical event
for the whole family. Nursing can facilitate the transi-
tional critical event through assessing preparedness,
resources, relationships and responsibility as part of
individual transfer plans. Such actions would facilitate
the young adult’s experience of feeling significant as
collaborator in own health care. In the present meta-
synthesis, the experiences of transition for young adults
with chronic diseases appear to be generic; however, to
increase our knowledge and improve transfer to adult
hospital wards, we need further research that includes
participants across cultures and health care systems.
Transitional programmes that focus on the effectiveness
of health outcomes but fail to reflect a holistic view of
adolescents’ experiences (Crowley et al., 2011) should be
critically reviewed.
Conflict of interest
The authors have no conflicts of interest.
Funding
This study was partly funded by the University of Agder,
Norway, Familien Hede Nielsen Foundation and the
Nurses’ Research Foundation, Denmark.
134 L. Fegran et al. / International Journal of Nursing Studies 51 (2014) 123–135
Author contributions
Liv Fegran (L.F.), Mette Spliid Ludvigsen (M.S.L.), Lisbeth
Uhrenfeldt (L.U.), Hanne Aagaard (H.Aa.) and Elisabeth O.C.
Hall (E.O.C.H.) contributed substantially to the conception
and design of the study. L.F., M.S.L. and E.O.C.H. were
responsible for acquisition, analysis and interpretation of
data. L.F., M.S.L. and E.O.C.H. drafted the article. L.F., M.S.L.,
E.O.C.H., L.U. and H.Aa. critically reviewed the manuscript
for important intellectual content and approved the
version to be published.
Acknowledgements
The authors thank Professor Gabriele Meyer, Witten/
Herdecke University, Germany, for useful comments on
earlier drafts of this article, and librarian Ellen Sejersted,
University of Agder, Norway, for assistance with literature
searches.
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