Background: Limited knowledge exists of parents’ perceptions and experiences of children’s hospices and how these contribute to the varied access and uptake of services. Aim: This study aimed to explore parents’ perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. Methods: A two phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semi-structured interviews with parents of children who did not use the hospice (n=7) and parents who had previous experience of using a hospice (n=7). Results: A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child. Conclusions: Finding a place where they belonged and felt at ‘home’ made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children’s hospices a new perspective from which to view how parents access, accept and build relationships at the hospice.
|Journal||British Medical Journal Supportive & Palliative Care|
|Early online date||14 Aug 2018|
|Publication status||E-pub ahead of print - 14 Aug 2018|
- children’s palliative care
- place bonding
- parents’ experiences