‘Place bonding’ in children’s hospice care: a qualitative study

Abstract

BackgroundLimited knowledge exists of parents’ perceptions and experiences of children’s hospices and how these contribute to the varied access and uptake of services.AimThis 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.MethodsA 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).ResultsA 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.ConclusionsFinding 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.

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

“…From a more systemic perspective, there is evidence that the perception of safety and quality of care impacts how children and parents experience these transitional processes [ 61 , 67 , 90 , 91 , 114 , 124 ]. Similarly, policies to increase access to support services, as well as adequate socioeconomic conditions and the use of technological devices, are strategies associated with positive outcomes [ 52 , 59 , 60 , 65 , 74 , 116 , 123 , 125 ].…”

“…The existence of several prejudices associated with the necessary healthcare and the negative progression of the disease can make it difficult for a child with a CCC and their parents to accept the condition, aggravating uncertainty about the future [ 53 , 55 , 60 , 64 , 65 , 67 , 89 , 93 , 96 , 106 , 126 – 128 ].…”

Experiencing place identity and place belongingness at a children’s hospice: Parents’ perspectives

“…Following this, to identify more focused codes and categories, an iterative process of constant comparison between the data and emerging analysis enabled codes to be sifted, sorted and compared to others identifying relationships, patterns and differences in the data set. Finally, following the three-staged grounded theory method of data analysis described by Charmaz (2014), final categories that represented the experience of the parents in this study were identified and informed the development of a theory of place bonding (Figure 1, Dunbar et al, 2018). The findings in this article focus on two elements of place bonding: parents’ experiences of identity and belongingness at the hospice.…”

“…This article reports the experiences of 24 parents of children with LLCs who participated in a larger two-phase grounded theory study (Dunbar et al, 2018) exploring the perceptions, experiences, barriers and facilitators and their influence on the access to one children's hospice in a region in England. During the planning stage of the study, a careful assessment of risk versus benefit was made and strategies identified to protect parents and children.…”

“…Part of a larger study (Dunbar et al, 2018), the findings reported in this article aim to present the views of parents about their perceptions of the identity of the hospice and their sense of belongingness within the hospice.…”