Background As practitioners and clinicians who work closely with children, young people and their families, we always assume we know what the families need from hospices.
Aim(s) To review the current service offering of the hospice, to identify gaps in provision, to highlight any barriers there are to accessing services and to shape our delivery to meet the articulated future needs of our families and our commissioners.
Methods We commissioned an independent research company to undertake the research project which included a desktop literature review, quantitative and qualitative interviews with 100 families and interviews with stakeholders across the North West including FOI requests to CCGs. Neonatal and bereaved families were not included in this study.
Results Our families identified respite as the most important service offered by the hospice with wellbeing services identified as the second most important. Our stakeholders and CCGs acknowledged funding for palliative care is patchy across the North West and were concerned whether Derian House can continue to offer the services we currently provide. Additionally, the research also highlighted a big gap in transition services between children’s and adults’ hospices.. The results of the research have informed the strategy for the hospice for the next three years and CCGs will be using the research to revise and develop their own services for children and young people.
Conclusions The results supported our continued provision of planned respite, it also highlighted areas which may act as barriers to accessing services which include transport and also the information provided to external services explaining the facilities offered to families. These barriers identified by this research project now form part of our strategy over the next three years. We will continue to review services and engagement with families, and will be further exploring needs for neonatal families and the need of families for end-of-life and bereavement.
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