Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain. Rainbows Trust Children's Charity aims to bridge gaps in services by providing family support workers (FSWs). This study used a range of methods to explore key aspects of the work of the FSWs with 55 families. The study revealed how the FSWs became a presence in families' lives in 3 main ways: (1) encompassing and embracing through supporting needs and promoting resilience, (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness, and (3) accompanying and enduring by "being with families" in different settings, situations and crises. The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is not usually provided by other services.
Carter, B., Edwards, M. & Hunt, A. 2014. Being a presence: the ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children. Journal of Child Health Care, e-pub ahead of print Jan 23rd 2014.
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