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 semistructured interviews with parents of children who did not use the hospice (n=7) and with 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.
- children’s palliative care
- hospice care
- place bonding
- parents' experiences
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Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent Not required.
Ethics approval De Montfort University and National Research Ethics Service East Midlands (14/EM/1004).
Provenance and peer review Not commissioned; externally peer reviewed.
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