Anxiety and depression in bereaved parents after losing a child due to life-limiting diagnoses: A Danish nationwide questionnaire survey.

CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression.

OBJECTIVE: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and imminent death and 3-5 years after the loss in order to target future interventions.

METHODS: A Danish nationwide cross-sectional questionnaire survey. From 2012-2014 a register-based study identified causes of deaths of 951 children 0-18 years of age. Potential palliative diagnoses were classified according to previously used classification. Four-hundred-and-two families were included. A modified version of the self-administered questionnaire "To lose a child" was used. Non-response surveys identified reasons for lack of response.

RESULTS: In all, 136 mothers and 57 fathers completed a questionnaire, representing parents of 152 children (38%). Sixty-five% of mothers and 63% of fathers reported moderate to severe anxiety during the child´s illness. However, 3-5 years after their loss anxiety had decreased markedly. Thirty-five% of mothers and 39% of fathers reported moderate to severe depression during the child´s illness; 3-5 years after the loss they were suffering equivalently from depression. The Center for Epidemiologic Studies Depression (CES-D) scale indicated that severe depression was significantly associated with lower education and being unmarried.

CONCLUSION: The reporting of anxiety during the child´s illness and prolonged depression in bereaved parents 3-5 years after the loss indicates a potential need for psychological interventions. In the process of implementing specialized paediatric palliative care in Denmark our findings should be considered for future treatment programs.