Background In the UK, 23 000 parents die annually leaving over 40,000 dependent children (Childhood Bereavement Network, 2015). Without support, the impact of parental loss on the social, emotional and physical development of children can last a lifetime (Moore & Raunch, 2010; Ellis, Dowrick, Lloyd-Williams, 2013). Children value honest communication about parental illness (Raveis, Siegel, Karus, 1999; Christ, Raveis, Siegel et al., 2005),but many parents are unprepared for these conversations and would like more support (Visser, Huizinga, Hoekstra et al., 2006; Semple & McCance, 2010). UK hospices contribute considerably to the end of life care of more than 200,000 patients a year (Hospice UK), of which anecdotal evidence suggests between 5%–10% have children under 18 years. To date, little data exists on the contribution UK hospices make to supporting families with dependent children.
Aim To examine the support provided by UK hospices to families with dependent children under 18 years when one parent is dying.
Method 197 UK hospices were invited to complete an online survey in March/April 2018. For pre-bereavement and bereavement, the survey asked about support delivered in terms of format, location and recipients and about processes for gathering information and for supporting staff. Region and size of hospice were collected. Responses were anonymous.
Results Response rate was 66% (130/197). All UK regions were represented. Most hospices provided in-patient and community services and were medium-sized in terms of beds and referrals. Among hospices responding, 78.4% (87/111) asked about dependent children; a substantial minority had no consistent or formal processes (21%; 24/111), and did not provide support for staff (21.5%; 20/93). For pre-bereavement and bereavement, written information, signposting to other services and one-to-one support were most delivered formats. Support was least likely to be provided in absence of the dying person.
Conclusion The research provides a comprehensive and representative account of support provided by hospices to families with dependent children prior to, and following, parental death. It identifies gaps in provision and can contribute to developing interventions that can be delivered by UK hospice staff.
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