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

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

Jindal-Snape D; Johnston B; Pringle J; Kelly T B; Scott R; Gold L; Dempsey R

BMC Palliative Care

2019

Female; Male; Young Adult; Adolescent; Humans; Longitudinal Studies; Cost of Illness; Perception; Quality of Life/px [Psychology]; Family/px [Psychology]; Health Personnel/px [Psychology]; Interviews as Topic/mt [Methods]; Qualitative Research; Transitional Care

BACKGROUND: There 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. METHODS: This 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. RESULTS: Life 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. CONCLUSIONS: This 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.

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October 2019 List