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O-7 Preparing the way: evaluating support for children before the death of a parent or sibling
  1. Alison Penny
  1. Childhood Bereavement Network, London, UK


This presentation will introduce the Serious Illness in the Family Service Questionnaires: a new suite of tools for evaluating support for children and young people who are facing the death of someone important in their lives.

Around 24,000 parents die each year, leaving children under 18 (Childhood Bereavement Network, 2016), with 60–75% of these deaths being expected (End of Life Care Intelligence Network, 2011). Over 10,000 babies, children and young people under 25 die each year, many leaving siblings (Child Bereavement UK, 2017).

The death of a close family member is associated with a range of poor outcomes for children and young people both in the short and medium term and into adulthood, including early mortality, mental and physical health problems and disrupted education (Penny & Stubbs, 2015). For children bereaved of a parent through cancer, the time before the death is particularly stressful (Siegel et al., 1992). Over the last three decades, a range of services have developed across the UK to respond to bereaved children’s experiences and needs (Rolls & Payne 2003; Rolls & Payne 2004; Penny, 2011). An increasing number of services - including many hospices - are also offering support to children before a death, where this is possible.

There are considerable challenges to evaluating this type of support. This presentation will share findings from a project that:

  • reviewed the areas of concern to families and practitioners about children’s needs before a death in the family;

  • scoped interventions and built consensus on the aims of support services in the UK;

  • reviewed current quantitative measures being used in evaluations in research and practice;

  • identified key challenges to evaluating these interventions;

  • developed a suite of self– and parent–reported measures to capture changes towards outcomes across hospices and other services working with children facing the death of someone important.

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