'Place bonding' : parents' journeys towards a sense of rootedness in children's hospice care

• Main Author: Dunbar, Helena
• Published: De Montfort University 2016
• Subjects: 362.19892
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.716178

The number of children with life-limiting and life-threatening conditions in the UK is rising. In response to the reality that many children are living longer and complexities of care are increasing, providers of palliative care services are tasked with developing flexible approaches to delivery of care. Children’s hospices are key players in this. However, evidence suggests that only a small percentage of parents of children with life-limiting and life-threatening conditions choose to access hospice services. This study explored parents’ perspectives of existing hospice and palliative care services in one region of England. Barriers and facilitators to accessing services, the types and characteristics of hospice services parents wanted and how best these services could be delivered to meet the needs of the population of children with life-limiting and life-threatening conditions were considered. A two phase qualitative study underpinned by a constructivist grounded theory methodology was employed for the study. In Phase 1 focus groups were used to collect data from twenty four parents of children accessing services at the hospice. In Phase 2 in-depth semi-structured interviews were conducted with seven parents of children who did not use services at the hospice and with a further seven parents who had either previous experience of the hospice or were using a hospice outside of the region. Data derived from the interviews were analysed using a grounded theory method. Three main themes were generated: Coming ‘Home’; This is Living Now; and Moving Forward. A theory of place bonding was developed which reflects how affective bonds develop over time between parents of children with life-limiting conditions and the hospice. The five dimensions of place bonding: place familiarity, place identity, place belongingness and place association led to a deeper sense of place rootedness and established bonds with the hospice. Finding a place where they belonged and where they felt at ‘home’ made the decision to accept help in caring for their child with a life-limiting condition more manageable. The thesis concludes by acknowledging the importance of place bonding and its potential to influence practice for children’s hospices and also in providing a platform for service development for other respite situations for children and young people with life-limiting conditions.