Financial effects for families after the death of a disabled or chronically ill child: a neglected dimension of bereavement

Aim To investigate the financial circumstances of families whose child had died after a long-term illness and the factors contributing to financial difficulties. Research methods Qualitative exploration involved semi-structured interviews with a purposive sample of 16 families whose child had died in the last 2 years and who were in touch with a children's hospice. Results All parents were affected by loss of or reduction in social security benefits. This could result in an immediate drop in income of as much as 72%. Paying for funerals and headstones could be hard. Financial problems after the child's death often had origins in the period of care, when parents had reduced incomes but faced extra costs of care. Some families had got into debt. Re-engaging with employment could be a slow process, and it was not clear where professional responsibility lay in providing financial advice and support. Insensitive treatment by administrative agencies increased problems for parents. Discussion Findings provide further evidence of the financial impact for families of caring for severely disabled children. This study shows how this impact can extend far into the period after death. Findings indicate the need for financial advice and support to families both during the period of care and after bereavement.