Background Service user involvement in design, implementation and evaluation of services is becoming increasingly commonplace (Omeni, Barnes, MacDonald, et al. BMC Health Serv Res. 2014;14, 491). Research also shows that service user involvement has a positive impact on the organisation and the service users (Gordon, Franklin, Eltringham. Res Involv Engagem. 2018; 4, 11; Minogue, Boness, Brown, et al. Int J Health Care Qual Assur Inc Leadersh Health Serv. 2005;18(2–3):103–12).
Aims To evaluate and understand what matters to the families, what families with children and young people with life-limiting conditions need to live the best life they can, and what role do the children’s hospices in Wales play in providing this support?
Methods Nov. 2019 – Jan. 2020: Online survey to gather views of families using both children’s hospices in Wales. January 2020 – February 2020: Ten in depth interviews conducted to supplement the findings of the online survey.
Results Hospice services provide essential support to families and are the main places that families access the support they need. Access to respite/short break care is essential to family coping and wellbeing. Complexity of condition has an impact on care and family life. Support for young people leaving hospice services is lacking and there is a need for bereavement support and counselling.
Conclusion Children’s hospices in Wales are often the only places where families can access the tailored support that they need to care for their child. Including families in service design, implementation and evaluation at all levels is crucial to providing excellent services.
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