Qualitative evaluation of the impact of a paediatric palliative care family support volunteering project

Qualitative evaluation of the impact of a paediatric palliative care family support volunteering project

Scott R; Chambers L; McNamara K

Palliative Medicine

2018

human; child; female; male; palliative therapy; controlled study; major clinical study; conference abstract; sibling; quality of life; human experiment; semi structured interview; skill; volunteer; staff; questionnaire; qualitative analysis; gardening; housekeeping; leadership; shopping

Background: Families caring for a child with a life limiting condition not only provide 24 hour complex care but also must care for siblings and cope with everyday tasks. Research suggests families could benefit from 'domestic support' (Fraser et al, 2015). This abstract reports on a qualitative evaluation of the second phase of a pilot project offering volunteer home support to such families. Three pilot sites were involved including voluntary and NHS community children's palliative care (CPC) teams. Method: Qualitative questionnaires were completed by families, staff, volunteers and strategic leaders before and after the pilot, followed by small number of semi-structured interviews to explore experiences in more depth. Results: Volunteers provided a range of support including, housework, gardening, shopping homework with siblings and taking siblings to and from school. Sixty volunteers were recruited and 62 families matched with volunteers. As a result of volunteer support, 100% of families reported improvement in quality of life, 95% feeling less stressed and more able to cope with 65% feeling less isolated. All volunteers (100%) felt valued, 84% increased skills and confidence and 92% wished to continue volunteering. The project enabled pilot sites to extend the range of support offered and increased organisational capacity. Volunteers enriched the organisation and brought new ideas and impetus. Volunteers were able to respond quickly and appropriately in crisis situations. Challenges identified included some families feeling that the offer of volunteer help implied that they were not coping, volunteers ' availability not always matching families preferred times and allowing enough time for planning and set up. A set of online resources were developed as part of the project. These include guidance on planning and implementation in different settings are now freely available. Conclusion: This evaluation suggests that families benefit greatly from volunteer support in the home and may be of value to other CPC services considering how too extend their support to families. A subsequent evaluation, with reflections on sustainability replicability is underway.

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August 2018 List