Place bonding' in children's hospice care: a qualitative study
hospice; parent experiences; parent perspectives; parental experience; parental perspectives; pediatrics; place bonding
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. METHOD(S): 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). RESULT(S): 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. CONCLUSION(S): 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. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Dunbar H; Carter B; Brown J
BMJ Supportive & Palliative Care
2020
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<a href="http://doi.org/10.1136/bmjspcare-2018-001543" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001543</a>
Coming 'Home': Place bonding for parents accessing or considering hospice based respite
Children; Home; Hospice; Place bonding; Respite
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming 'Home'. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could 'come home'.
Dunbar H; Carter B; Brown J
Health Place
2019
<a href="http://doi.org/10.1016/j.healthplace.2019.03.004" target="_blank" rel="noreferrer noopener">10.1016/j.healthplace.2019.03.004</a>