Abstract

Respite/short breaks have been recognized as an important supportive service in paediatric palliative care (Knapp & Contro, 2009; Ling, 2012). In some countries, for example the UK, hospices are key players in this delivery. Despite evidence that supports short break services in hospices (Kirk & Pritchard, 2012) the literature suggests that there is varied access and uptake of such provision (Smith, Graham, & Herbert, 2017; Devanney & Bardley, 2012; Knapp, Shenkman, Marcu et al., 2009). A two-phase grounded theory study was conducted in one region in England, to explore parental experiences and perceptions of children’s hospices, the barriers and facilitators to access and the characteristics which parents wanted from hospice services.

A two phase grounded theory study (Charmaz, 2014) was conducted: Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24) and in Phase 2 semi-structured interviews were conducted with parents of children who did not use the hospice (n=7) and parents who had previous experience of using a hospice (n=7). Analysis of the data identified three main themes: Coming ‘Home’; This is Living Now; and Moving Forward. A grounded theory model of place bonding was developed which illustrates the cognitive journey and characteristics which are important for parents of children with life-limiting conditions when considering/receiving hospice care for their child. 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.