Children's Perspectives of a Pediatric Hospice Program

Abstract

Little attention has been paid to documenting the experiences of children in pediatric palliative care programs, both those who are ill and their siblings. In this evaluation study of Canuck Place, a Canadian, free-standing hospice program, 26 ill children and 41 of their siblings completed mail-out questionnaires. In addition, four ill children and 10 siblings participated in face-to-face interviews. Results indicate that nearly all children were enthusiastic about the program's activities and the physical environment at Canuck Place. Engaging activities, physical amenities, and the social climate promoted by staff, volunteers, and other families were important contributors to the children's satisfaction. Suggestions for better serving adolescents included: a wider range of age-appropriate activities, games, and toys-especially for teens and older children; more trips and tours outside the building and around town; and caring staff and volunteers who are "attentive-in-themoment". From the children's perspective, the key to Canuck Place's success is its social climate of caring, safety, friendliness, acceptance, and variety. I'institution et en ville. lis souhaitent egalement qu'i1 yait plus de benevoles a leur ecoute, Du point de vue des enfants, la ole du succes de Canuck Place repose sur I'ambiance detendue, la bonne entente, Ie sentiment de securtts que I'institution leur procure et la gentillesse du personnel.

The Impacts of short break provision on families with a disabled child: an international literature review

“…A small number of studies have sought the views of disabled children themselves regarding short breaks (Minkes et al 1994, Prewett 1999, Kelly et al 2000, McConkey & Truesdale 2000, Davies et al 2005, Thompson et al 2009, Langer et al 2010, Preece & Jordan 2010). The majority of disabled children have been found to enjoy their short breaks and have reported specific benefits including: access to more toys, games and videos than they had at home as well as opportunities for sport, team games and social activities (Minkes et al 1994); opportunities for social interaction and providing new relationships and social activities, including relationships with support carers, their children, and their friends and neighbours (Prewett 1999); developing friendships (McConkey & Truesdale 2000); and social benefits including maintaining friendships outside of the school setting, for example at a holiday club, as well as the chance to take part in fun activities (Langer et al 2010).…”

“…One study looked at siblings’ perspectives of a paediatric hospice programme which enabled siblings to receive schooling and stay overnight at the hospice (Davies et al 2005). Siblings rated the activities at the hospice highly and a majority mentioned the novelty of getting special attention themselves.…”

“…The majority of disabled children have been found to enjoy their short breaks and have reported specific benefits including: access to more toys, games and videos than they had at home as well as opportunities for sport, team games and social activities (Minkes et al 1994); opportunities for social interaction and providing new relationships and social activities, including relationships with support carers, their children, and their friends and neighbours (Prewett 1999); developing friendships (McConkey & Truesdale 2000); and social benefits including maintaining friendships outside of the school setting, for example at a holiday club, as well as the chance to take part in fun activities (Langer et al 2010). In relation to a paediatric hospice programme, children enjoyed the activities and physical environment of the hospice which was regarded as home-like, and most enjoyed getting away from their home and family (Davies et al 2005). In relation to one autism-specific residential short break service, children spoke positively about some activities and other children at short breaks, but negative aspects were also identified, such as the behaviour of other service users including screaming and hitting, and staff being bossy (Preece & Jordan 2010).…”

The impact of short breaks on families with a disabled child: report one of the quantitative phase

“…Benefits identified for parents and carers include reduced levels of stress (Marc andMacDonald, 1988, Bose, 1991) and opportunities for rest and relaxation (Stalker, 1988, McConkey et al, 2004. Several studies have identified the importance of opportunities for uninterrupted sleep (Eaton, 2008, McConkey et al, 2004, McConkey, 2008, MacDonald, 2004, Davies et al, 2005. These benefits have in turn been connected with parents' ongoing or increased capacity to continue to care for the disabled child (Eaton, 2008, MacDonald, 2004, Tarleton and Macaulay, 2002, Smith et al, 1988.…”

“…Benefits identified for children include enjoyment of high levels of attention (Gerard, 1990), opportunities for new experiences (Gerard, 1990, Davies et al, 2005, McConkey et al, 2000 and chances to form friendships and socialise with peers and workers (Minkes et al, 1994, Tarleton and Macaulay, 2002, McConkey et al, 2004.…”