Review article
Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

https://doi.org/10.1016/j.pec.2016.08.011Get rights and content

Highlights

  • Parents view young person progression to self-care as an incremental process.

  • Parent perceptions of child readiness and wellness impact on healthcare autonomy.

  • Parents are concerned about a lack of transitional healthcare.

  • Parents can adjust their behaviour to support their child’s independence.

  • Healthcare professionals can support parents to facilitate adolescent autonomy.

Abstract

Objective

To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services.

Methods

Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised.

Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence.

Conclusion

Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers.

Practice implications

Interventions are needed which address the transitional care needs of parents as well as young people.

Introduction

Long-term physical health conditions (LTCs) affect significant and increasing numbers of adolescents in the UK [1]. Advances in treatment/technology mean that these young people are now more likely than ever to reach adulthood [2]. This will at some point, require them to assume a greater degree of independence and self-care than previously encountered [3], in addition to transferring from paediatric to adult services for ongoing healthcare [4]. The need for effective transitional care and the benefits this provides in terms of maintaining engagement with healthcare throughout the life course and improving health outcomes is well established [5]. However, transition cannot be conceptualised as a young person-only phenomenon. Parents and adolescents together create the emotional environment necessary for the adolescent’s adaptation to the demands of young adulthood [6], [7]. Healthcare transition therefore also requires parents to adjust their care giving role, gradually relinquishing control of their child’s LTC and supporting progression to young person autonomy [8], [9]. Studies examining the role of family members during the transitional period [8], [10], [11] suggest parents face a range of new care challenges associated with their and their child’s development, including adaptation to a changing role, allocation of treatment responsibilities and anxiety regarding their child’s illness trajectory [12].

Despite recognition of the systemic nature of transition [7] and the effect of this developmental phase on shifting roles within family systems, previous reviews have focused on the perspectives of patients [13], [14], [15], transitional models [16], [17] and healthcare practices [18], [19]. Reviews have been carried out on the experience of parenting a child with a LTC [20] and on the effectiveness of interventions for parents of children and adolescents with chronic illness [21], [22], however, these do not consider the experience of parenting a child with a chronic condition during their transition to adulthood and adult-services.

It is important to understand how parents experience their child’s transition to adulthood because how parents manage and cope with their own change in roles and responsibilities will likely impact on both their child’s transition to independent self-care as well as their own psychological well-being. Understanding the challenges that parents face, from their perspective, will further indicate support needs.

This review aimed to collect and synthesise primary research relating to how parents understand and experience their role as their child with a LTC transitions to adulthood and adult healthcare services. The objectives were to: (a) understand how parents experience their care-giving role in relation to supporting their child’s transition to adulthood/services; (b) understand how parents experience their care-giving role in relation to their own well-being; (c) make recommendations regarding how healthcare providers can support parents during their child’s transition.

Section snippets

Methods

The review adopted a systematic search methodology in accordance with PRISMA guidance [23] and followed the analytic procedure for ‘thematic’ synthesis [24].

Systematic search

1966 articles were retrieved for assessment against the inclusion criteria with 32 papers included in the review (Fig. 2). Papers presented qualitative data on parents’ views and experiences of their child’s healthcare transition in a variety of LTCs (asthma, arthritis, cancer, cystic fibrosis, congenital heart disease, cerebral palsy, diabetes, epilepsy, Marfan syndrome, sickle cell disease and spina bifida). Studies were conducted across six countries (Switzerland, UK, Canada, USA, Australia

Discussion

This review thematically synthesised 32 papers from six countries reporting how parents understand and experience their role as their child with a LTC transitions into adulthood and adult healthcare services. Developing understanding of the parent perspective is essential for ensuring the provision of effective transitional healthcare. Although studies were diverse in terms of LTCs, they were comparable, enabling the development of overarching themes.

Findings revealed that parents generally

Competing interests

The authors declare they have no competing interests.

Author contributions

All authors contributed to the review design and analysis of papers. GH conducted the searches. GH and AF conducted data extraction and coding. GH drafted the manuscript. All authors revised the manuscript and approved the final version.

Acknowledgements

AF and KS were funded by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care West Midlands initiative. This paper presents independent research and the views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

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