Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: A qualitative study

Title

Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: A qualitative study

Creator

Kirk S; Fraser C

Publisher

Palliative Medicine

Date

2013

Description

Background:Transition to adult services and adulthood is now a prospect for young people with life-limiting conditions requiring palliative care. Little is known about their transition experiences or how children's hospices can support a young adult population during/following transition.Aims:(1) To examine how young people with life-limiting conditions and their parents experience transition. (2) To identify families' and hospice staff's perceptions of family support needs during transition. (3) To identify the implications for children's hospices.Design:Qualitative study using in-depth, semi-structured interviews. Analysis used a grounded theory approach.Setting/participants:A total of 39 participants recruited from one children's hospice in the United Kingdom.Results:Transition planning was absent or poorly coordinated; for most families, there were no equivalent adult health/social services. Consequently, it was a time of uncertainty and anxiety for families. Moving to a young adult unit was a positive experience for young people as the building/support model recognised their adult status. However, they had unmet needs for emotional support and accessing information/services to realise their aspirations. Parents had unmet emotional needs and were unclear of support available once their children reached adulthood. Staff identified training needs in relation to working with adults, providing emotional support and acting as an advocate/key worker.Conclusions:Providing an appropriate building is only one aspect of developing support for young adults. A different model of support is needed, one which promotes young people's independence and provides emotional support while continuing to support parents and siblings. Hospices could play a role in transition support and coordination.
2013-10

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Citation

Kirk S; Fraser C, “Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: A qualitative study,” Pediatric Palliative Care Library, accessed July 4, 2022, https://pedpalascnetlibrary.omeka.net/items/show/14689.

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