How do parents experience support after the death of their child?

Abstract

Background: A child's death is an enormous tragedy for both the parents and other family members. Support for the parents can be important in helping them to cope with the loss of their child. In the Netherlands little is known about parents' experiences of the support they receive after the death of their child. The purpose of this study is to determine what support parents in the Netherlands receive after the death of their child and whether the type of care they receive meets their needs. Method: Parents who lost a child during pregnancy, labour or after birth (up to the age of two) were eligible for participation. They were recruited from three parents' associations. Sixty-four parents participated in four online focus group discussions. Data on background characteristics were gathered through an online questionnaire. SPSS was used to analyse the questionnaires and Atlas ti. was used for the focus group discussions. Results: Of the 64 participating parents, 97% mentioned the emotional support they received after the death of their child. This kind of support was generally provided by family, primary care professionals and their social network. Instrumental and informational support, which respectively 80% and 61% of the parents reported receiving, was mainly provided by secondary care professionals. Fifty-two per cent of the parents in this study reported having received insufficient emotional support. Shortcomings in instrumental and informational support were experienced by 25% and 19% of the parents respectively. Parental recommendations were directed at ongoing support and the provision of more information. Conclusion: To optimise the way Dutch professionals respond to a child's death, support initiated by the professional should be provided repeatedly after the death of a child. Parents appreciated follow-up contacts with professionals at key moments in which they were asked whether they needed support and what kind of support they would like to receive.