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Journal ArticleDOI

Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services.

TL;DR: Findings support the development of interventions for parents to emphasize their role in transition and guide the transfer of self‐management skills from parent to young person.
Abstract: Predictors of successful transition from pediatric to adult services include ability to self-manage and engage with healthcare services. Parents have a key role in healthcare management throughout childhood and adolescence including encouraging development of self-management skills in their children. Transition to adult services can be challenging for parents and young people, yet parents' views regarding transition remain largely unexplored. Nine parents of pediatric liver transplant recipients (15.2-25.1 yr) participated in semistructured interviews. Interviews were analyzed using IPA. Analysis revealed three key themes: "emotional impact of transplantation," "protection vs. independence," and "ending relationships and changing roles." Parents expressed the dichotomous nature of the desire to promote independence in their child while still maintaining control and protection, and discussed how changing roles and relationships were difficult to navigate. Parents are important facilitators of young people's development of self-management skills for successful transfer to adult services. Parents should be supported to move from a "managerial" to a "supervisory" role during transition to help young people engage independently with the healthcare team. Findings support the development of interventions for parents to emphasize their role in transition and guide the transfer of self-management skills from parent to young person.

Summary (2 min read)

Jump to: [Introduction][Methods][Results][Discussion] and [Conclusion]

Introduction

  • Approximately 15% of adolescents have a long-term health condition (1) which can significantly impact upon their daily lives.
  • Transition involves preparing, adapting and moving to adult services in a multifaceted process whereby the medical, educational, vocational and psychosocial needs of the patient are incorporated into a purposeful, planned programme.
  • It is important to acknowledge that parents also go through an important transition of their own during this time (5) as the change in healthcare setting has an impact on their existing roles, responsibilities and relationships.
  • Parents have to learn to support the increasing autonomy of their child while also managing their feelings about their own transition.
  • Understanding transition from the perspective of parents will provide us with a clearer view of how the authors can better support both young people and parents through transition, as well as increasing their knowledge about the shifting roles and responsibilities of emerging adulthood in the context of liver transplantation.

Methods

  • Parents were eligible for inclusion if they had a child who had undergone a liver transplant in childhood and who had transferred to adult services within the previous five years or were expected to move to adult services within 12 months.
  • The researcher telephoned those who had been invited and if parents wanted to take part a suitable time and place for the interview was arranged.
  • Each researcher’s background, experiences and beliefs contributed to and were integral to the interpretative process and allowed for a meaningful perspective of experiences to be gained .(22) Procedure Each interview began with a brief introduction to the purpose of the study and format of the interview.
  • Topics included their experience of their child’s illness or transplant, their understanding and experiences of transition and what would, or had, helped during the process of transition (Table 2).
  • The transcript was then coded individually by both researchers using initial notes for guidance.

Results

  • Analysis of the interviews revealed three main themes: “emotional impact of transplantation”, “protection versus independence” and “ending relationships and changing roles”.
  • Parents reflected on how going through the process of transplant had been an unpredictable, anxious and upsetting time.
  • They had doubts about their child’s ability to manage their own care in adult services as they felt they still had a very active role in supporting them to manage their condition.
  • I think what bothers me more than anything [is] if things start to reject or things start to go wrong that they will actually tell her and not us.
  • Mother of a young person (female, age 21) post-transfer For parents, the loss of this relationship at the time of transfer also seemed to represent a termination of their role as a key player in their child’s condition as parents were aware that they might be treated different by clinicians in adult services as the focus of care shifted.

Discussion

  • The purpose of the current study was to understand parental experiences of transition to support both parents and young people to self-manage and engage with the healthcare system during the transition process.
  • (3, 26) The shift in parental role and the impact on parents has also been identified previously in a study of parents of young people who had undergone liver transplantation 20 and had started the transition process but had not yet transferred.
  • Therefore, it is imperative that parents can support their young people appropriately as they gain independence and research suggests that parents are seeking support from health professionals in order to do this.
  • Parents saw themselves as key members of the healthcare relationship, often involved in making the decisions about their child’s health and treatments.
  • As a result, the study may not have represented parents who felt more relaxed about transition and therefore the opportunity to explore the factors associated with positive parental transition experiences may have been missed.

Conclusion

  • Parents are important facilitators of young people’s development of self-management skills for successful transfer to adult services.
  • Transition programmes have demonstrated benefits for parents as well as for young people and the current study emphasises the need for the development, implementation and evaluation of interventions to support parents as their children become more autonomous.
  • The authors also thank the parents who took part for their valuable contribution to the study and Children’s Liver Disease Foundation for their input as the representative for Patient and Public Involvement.
  • This study was funded by a research grant from BSPGHAN/CORE.

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The University of Manchester Research
Parents in transition: Experiences of parents of young
people with a liver transplant transferring to adult services
DOI:
10.1111/petr.12760
Document Version
Accepted author manuscript
Link to publication record in Manchester Research Explorer
Citation for published version (APA):
Wright, J., Elwell, L., Mcdonagh, J., Kelly, D. A., & Wray, J. (2017). Parents in transition: Experiences of parents of
young people with a liver transplant transferring to adult services. Pediatric transplantation, 21(1).
https://doi.org/10.1111/petr.12760
Published in:
Pediatric transplantation
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Download date:09. Aug. 2022

1
Parents in transition: Experiences of parents of young people with a liver transplant
transferring to adult services
Wright J
1
, Elwell L
1,2
, McDonagh JE
3
, Kelly DA
1
, Wray J
4
1
Liver Unit, Birmingham Children’s Hospital NHS Foundation Trust, United Kingdom
2
University of Birmingham, United Kingdom
3
Centre for Musculoskeletal Research, University of Manchester, United Kingdom
4
Critical Care and Cardiorespiratory Division, Great Ormond Street Hospital for Children NHS
Foundation Trust, United Kingdom
Corresponding author: Dr Jo Wray
Contact e-mail: jo.wray@gosh.nhs.uk
Contact telephone: +442078297822
Contact address: Great Ormond Street Hospital for Children NHS Foundation Trust
Great Ormond Street, London WC1N 3JH
Key words: parents, liver transplant, transition
Running title: Parents in transition

2
Abstract
Background
Predictors of successful transition from paediatric to adult services include ability to self-
manage and engage with healthcare services. Parents have a key role in healthcare
management throughout childhood and adolescence including encouraging development of
self-management skills in their children. Transition to adult services can be challenging for
parents and young people, yet parents’ views regarding transition remain largely
unexplored.
Methods
Nine parents of paediatric liver transplant recipients (15.2-25.1 years) participated in semi-
structured interviews. Interviews were analysed using Interpretative Phenomenological
Analysis.
Results
Analysis revealed three key themes: ‘emotional impact of transplantation’, ‘protection
versus independence’ and ‘ending relationships and changing roles’. Parents expressed the
dichotomous nature of the desire to promote independence in their child while still
maintaining control and protection, and discussed how changing roles and relationships
were difficult to navigate.
Conclusion
Parents are important facilitators of young people’s development of self-management skills
for successful transfer to adult services. Parents should be supported to move from a
‘managerial’ to a ‘supervisory’ role during transition to help young people engage
independently with the healthcare team. Findings support the development of interventions

3
for parents to emphasise their role in transition and guide the transfer of self-management
skills from parent to young person.

4
Introduction
Approximately 15% of adolescents have a long-term health condition (1) which can
significantly impact upon their daily lives. Although relatively rare, there are approximately
600 adolescent/young adult survivors (aged 15-25 years) of liver transplantation in the
UK,(2) all of whom require life-long medication and regular, long-term follow-up at a
specialist centre. For these young people, their parents have had a significant role in
managing their health condition and have been key contributors during their time in
paediatric services. As young people reach adolescence there can be a struggle as they seek
greater autonomy and independence at a time when parents may not be ready to let go,
nor the young people equipped with the skills to self-manage. Findings show that coping
with their child’s newly acquired skills of autonomy can be difficult for parents and further
support from health professionals during this time is required.(3)
Adolescents with a liver transplant not only have to contend with learning to manage their
own condition as they enter young adulthood, but they also have to navigate the change in
healthcare settings which occurs as they outgrow paediatrics and require follow-up in adult
services. Transition involves preparing, adapting and moving to adult services in a multi-
faceted process whereby the medical, educational, vocational and psychosocial needs of the
patient are incorporated into a purposeful, planned programme.(4) Parents of a child with a
liver transplant have an important role in supporting their child through transition.
However, it is important to acknowledge that parents also go through an important
transition of their own during this time (5) as the change in healthcare setting has an impact
on their existing roles, responsibilities and relationships. As adolescence and transition
proceed, roles and responsibilities shift as young people develop skills of self-management

Citations
More filters
Journal ArticleDOI
TL;DR: The cumulative number of liver transplant recipients is peaking, requiring novel systems of health care delivery that meet the needs of this special patient population.

55 citations

Journal ArticleDOI
TL;DR: There is a paucity of outcomes that define ‘successful’ transition and consequently a lack of reliable research evaluating the effectiveness of transitional care interventions to support young people moving to adult health services.
Abstract: Young people with long-term health conditions (LTCs) can face challenges when making the transition to adult health services. This paper sought to identify studies that assess and explore transitional care for young people with LTCs. Two conditions were used as exemplars: juvenile idiopathic arthritis (JIA) and epilepsy. A scoping review of the literature was conducted by using search terms to search for papers in English between 2001 and 2016 concerning transitional care on four databases. Qualitative papers were reviewed and synthesized using thematic analysis. Quantitative papers using health outcomes were also synthesized. Twenty-eight papers were selected for review. Despite the wealth of literature concerning aspects of transitional care that are key to a successful transition for young people with JIA or epilepsy, there is a paucity of outcomes that define 'successful' transition and consequently a lack of reliable research evaluating the effectiveness of transitional care interventions to support young people moving to adult health services.

23 citations


Cites background from "Parents in transition: Experiences ..."

  • ...From the literature, there is an understanding from parents and carers that they have difficulty adjusting to their role of reduced responsibility (Schultz, 2013), and this is further supported in the broader transition literature (Reed-Knight et al., 2014; Wright et al., 2017)....

    [...]

Journal ArticleDOI
TL;DR: Recommendations for improving transition and transfer for AYA with pSLE include setting expectations of the AYA patient and family concerning Transition and transfer, developing AYA’s self-management skills, and preparing an individualised transition plan.
Abstract: The prevalence of paediatric-onset SLE (pSLE) is estimated at 1million people worldwide and accounts for a significant proportion of SLE morbidity, mortality and cost. Patients with pSLE are especially vulnerable during and immediately following transfer from paediatric to adult rheumatology care, when substantial delays in care and increased disease activity are common. Transition is the process through which adolescents and young adults (AYA) develop the skills needed to succeed in the adult healthcare environment, a process that typically takes several years and may span a patient's time in paediatric and adult clinics. Recommendations for improving transition and transfer for AYA with pSLE include setting expectations of the AYA patient and family concerning transition and transfer, developing AYA's self-management skills, preparing an individualised transition plan that identifies a date for transfer, transferring at a time of medical and social stability, coordinating communication between the paediatric and adult rheumatologists (inclusive of both a medical summary and key social factors), and identifying a transition coordinator as a point person for care transfer and to monitor the AYA's arrival and retention in adult rheumatology care. Of paramount importance is empowering the adult rheumatologist with skills that enhance rapport with AYA patients, engage AYA patients and families in adult care models, promote adherence and encourage ongoing development of self-management skills.

21 citations

Journal ArticleDOI
TL;DR: There is a paucity of data for many details of transition and the factors leading to an effective transfer to an adult care provider, making this a significant opportunity for future research.
Abstract: With improving outcomes after thoracic transplantation, more children are surviving to adulthood and requiring specialized adult care. A systematic and effective program is essential to transition these patients from a pediatric to adult health care setting. In this review, we discuss the concept of transition and the factors leading to an effective transfer to an adult care provider, including administrative support, patient/provider preparation, and the navigation of potential barriers. Notably, there is a paucity of data for many details of transition, making this a significant opportunity for future research.

18 citations

Journal ArticleDOI
TL;DR: Results suggest that a structured transition program is effective in improving overall patient medical knowledge in relation to their heart transplant and enhancing patient medication adherence.
Abstract: Transition to adult health care has become a mainstream focus in pediatric health care as a higher percentage of patients are surviving into adulthood. This study investigated the success of a structured educational transition program in improving pediatric heart transplant patients' overall medical knowledge, medication adherence, readiness to transition, as well as parental perceptions of their child's readiness to transition to aid in the successful transition to an adult heart transplant program. Patients underwent a structured transition program over 2 years that included a total of seven 2-hour educational sessions hosted quarterly. This study comprised of a retrospective review of 12 heart transplant patients between the ages of 16-22 years. Test results indicated a statistically significant increase in overall medical knowledge scores from presession assessment compared to post-session assessment. Participants remained confident in their ability to transition throughout the program. Further, a statistically significant decrease in participant non-adherence was observed, as percentage of calcineurin inhibitor levels determined to be out of range decreased over the course of the program. Results suggest that a structured transition program is effective in improving overall patient medical knowledge in relation to their heart transplant and enhancing patient medication adherence. To effectively facilitate transition, pediatric providers, caregivers, and patients must communicate to provide a purposeful planned transition experience from pediatric to adult health care.

13 citations

References
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TL;DR: In this article, the authors present a survey of qualitative research in history and in the social sciences, focusing on seven stages of the research process: conceptualizing the research interview, conducting an interview, investigating the interview, and conducting an investigation.
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Additional excerpts

  • ...A qualitative semistructured interview design was chosen to allow for exploration of the experiences of transition for parents (21)....

    [...]

Book
25 Dec 2021
TL;DR: The aim of interpretative phenomenological analysis (IPA) is to explore in detail how participants are making sense of their personal and social world, and the main currency for an IPA study is the meanings particular experiences, events, states hold for participants as discussed by the authors.
Abstract: The aim of interpretative phenomenological analysis (IPA) is to explore in detail how participants are making sense of their personal and social world, and the main currency for an IPA study is the meanings particular experiences, events, states hold for participants. The approach is phenomenological (see Chapter 3) in that it involves detailed examination of the participant’s lifeworld; it attempts to explore personal experience and is concerned with an individual’s personal perception or account of an object or event, as opposed to an attempt to produce an objective statement of the object or event itself. At the same time, IPA also emphasizes that the research exercise is a dynamic process with an active role for the researcher in that process. One is trying to get close to the participant’s personal world, to take, in Conrad’s (1987) words, an ‘insider’s perspective’, but one cannot do this directly or completely. Access depends on, and is complicated by, the researcher’s own conceptions; indeed, these are required in order to make sense of that other personal world through a process of interpretative activity. Thus, a two-stage interpretation process, or a double hermeneutic, is involved. The participants are trying to make sense of their world; the researcher is trying to make sense of the participants trying to make sense of their world. IPA is therefore intellectually connected to hermeneutics and theories of interpretation (Packer and Addison, 1989; Palmer, 1969; Smith, in press; see also Chapter 2 this volume). Different interpretative stances are possible, and IPA combines an empathic hermeneutics with a questioning hermeneutics. Thus, consistent with its phenomenological origins, IPA is concerned with trying to understand what it is like, from the point of view of the participants, to take their side. At the same time, a detailed IPA analysis can also involve asking critical questions of the texts from participants, such as the following: What is the person trying to achieve here? Is something leaking out here that wasn’t intended? Do I have a sense of something going on here that maybe the participants themselves are less aware of?

5,225 citations

Journal ArticleDOI
01 Jan 2005
TL;DR: The authors provides a step-by-step guide to using qualitative research methods in psychology, from Conversation Analysis or Focus Groups to Interpretative Phenomenological Analysis or Narrative Psychology, from a qualitative perspective.
Abstract: Book synopsis: Undertaking qualitative research in psychology can seem like a daunting and complex process, especially when it comes to selecting the most appropriate approach for your project or assignment. This book, written and edited by a world-leading group of academics and researchers, offers an accessible, critical and practical way into qualitative research in psychology. Each chapter provides a detailed, step-by-step guide to using a qualitative research method – from Conversation Analysis or Focus Groups to Interpretative Phenomenological Analysis or Narrative Psychology. Whatever approach you choose to take, this book will ensure you get it right from the start.

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"Parents in transition: Experiences ..." refers methods in this paper

  • ...10 step process outlined by Smith & Osborn.(24) Interviews were firstly transcribed verbatim....

    [...]

Journal ArticleDOI
TL;DR: The paper outlines the theoretical roots of PA in phenomenology and symbolic interactionism and argues the case for a role for PA within health psychology, and focuses on one area in the health field, the patient's conception of chronic illness.
Abstract: This paper introduces interpretative phenomenological analysis (PA) and discusses the particular contribution it can make to health psychology. This is contextualized within current debates, particularly in social psychology, between social cognition and discourse analysis and the significance for health psychology of such debates is considered. The paper outlines the theoretical roots of PA in phenomenology and symbolic interactionism and argues the case for a role for PA within health psychology. Discussion then focuses on one area in the health field, the patient's conception of chronic illness and research in medical sociology from a similar methodological and epistemological orientation to PA is introduced. The paper concludes with an illustration of PA from the author's own work on the patient's perception of renal dialysis.

2,344 citations


"Parents in transition: Experiences ..." refers methods in this paper

  • ...Data analysis Interviews were analysed according to the principles of interpretative phenomenological analysis (IPA).(23) IPA focuses on the lived experience of the participant and endeavours to make sense of the meanings of events or experiences to the participants themselves....

    [...]

Frequently Asked Questions (2)
Q1. What have the authors contributed in "Parents in transition: experiences of parents of young people with a liver transplant transferring to adult services" ?

In this paper, the authors explore, using qualitative methodology, parental views and experiences of transition in liver transplant patients, and explore how to better support young people with the acquisition of self-management skills. 

Future research should focus on identifying what type of interventions parents find helpful and how such interventions should be delivered to optimise effectiveness for both parents and young people.