Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review.

The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.

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

Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.

'Place bonding' in children's hospice care: a qualitative study.

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.

Coming 'Home': Place bonding for parents accessing or considering hospice based 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'.