Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families and professionals

Divya Jindal-Snape,Libby Gold,Bridget Johnston,Raymond Dempsey,Timothy B Kelly,Rosalind Scott,Jan Pringle

doi:10.1186/s12904-019-0414-9

Abstract

BackgroundThere is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group’s perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time.MethodsThis qualitative study used a longitudinal design and data were collected using semi-structured interviews over a 6-month period at 3 time points. Participants included 12 YAs with life-limiting conditions and their nominated significant others (10 family members and 11 professionals). Data were analysed using a thematic analysis approach.ResultsLife transitions of YA and significant others are complex; they experience multiple and multi-dimensional transitions across several domains. The findings challenge the notion that all life transitions are triggered by health transitions of YAs, and has highlighted environmental factors (attitudinal and systemic) that can be changed to facilitate smoother transitions in various aspects of their lives.ConclusionsThis study makes a unique and significant contribution to literature. It provides evidence and rich narratives for policy makers and service providers to change policies and practices that are in line with the needs of YAs with life-limiting conditions as they transition to adulthood. Families and professionals have specific training needs that have not yet been met fully.

Highlights

There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals
The biographical uncertainty faced by these YAs can impact on their ability to engage in the psychosocial transitions required for adulthood [5]
Study aim and research questions The aim of the study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others

Summary

Introduction

There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. Life transitions A change in health can trigger a non-normative life transition leading to changes in identity, status, interactions and relationships, beliefs and values; requiring substantial psychosocial and cultural adaptation [1,2,3]. Such life transitions require multiple lenses and any particular transition is only one part of what an individual might be experiencing [1]. In the case of a young adult (YA) with life-limiting conditions, life transitions would include their clinical trajectory, their journey from adolescence to adulthood, educational journey, changes in identity (including sexual identity), and changes in the nature and type of relationship [4]. When children with life-limiting illnesses are not expected to live to adulthood, little preparation for these transitions will have been made [4, 6]

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