Review
Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis

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Abstract

Objectives

The objective of this study was to synthesize qualitative studies of how adolescents and young adults with chronic diseases experience the transition from paediatric to adult hospital care.

Design

The review is designed as a qualitative metasynthesis and is following Sandelowski and Barroso's guidelines for synthesizing qualitative research.

Data sources

Literature searches were conducted in the databases PubMed, Ovid, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL), ISI Web of Science, and Nordic and German databases covering the period from 1999 to November 2010. In addition, forward citation snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar.

Review methods

Of the 1143 records screened, 18 studies were included. Inclusion criteria were qualitative studies in English, German or Nordic languages on adolescents’ and young 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.

Introduction

Increasing numbers of adolescents with life-threatening conditions are surviving into adulthood, and consequently 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 interventive 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 paediatric 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.

Section snippets

Methods

The review was designed as a qualitative metasynthesis and follows Sandelowski and Barroso's (2007) guidelines for synthesizing qualitative research. A qualitative metasynthesis 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

Findings

We report the findings as metasummaries supported by tables and figures, and as metasynthesis presented in four themes.

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,

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 transitional critical event through assessing preparedness,

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.

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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