Recreating life after death-the place of professional and social support in the lives of parents following the death of a child from cancer

Abstract

BACKGROUND/PURPOSE: The death of a child from cancer poses increased risks of long-term psycho-social morbidities for parents. An associated risk is the dislocation experienced by parents in the transition from the hospital into their community following the death of their child. This multi-site study evaluated the impact of professional and social support utilized by parents throughout their child's palliative and end of life care and their bereavement. METHODS: Parents whose child had died from cancer (>6 months; <10 years bereaved) were invited to complete a questionnaire and participate in a semi-structured telephone interview through four paediatric oncology facilities. Seventy-five parents participated (49% interview opt in; 22% male, mean age 48 years, mean bereavement 7.2 years, SD 7.2). Data were analyzed using SPSS22 and NVivo9. RESULTS: Before their child's death, 45% of parents indicated they would have liked more help than they received. Bereaved parents reported that their most helpful supports included family/friends/neighbors ('somewhat'/'very helpful': 85%), their partner/spouse (82%), and other oncology and/or bereaved parents (50%). Empathic gestures (e.g. sympathy cards) were highly regarded ('somewhat'/'very helpful': 75%). 'Needing to be strong for others' was parents' greatest barrier to accessing support before ('often'/'always': 59%), and following, the child's death ('often'/'always' 36%). CONCLUSIONS: Bereaved parents draw on a range of internal, professional, and social resources in the lead up to and following the death of their child from cancer. Hospital-based bereavement programs may provide transitional support for bereaved parents as they adjust to a 'new normal' in their personal and social worlds. Research Implications: Future research is necessary to further understand the range of professional and social supports parents find most helpful in their adjustment following the death of their child from cancer. Practice Implications: This study provides valuable insights into the breadth of professional, social, and emotional supports parents draw on in the lead up to and following the death of their child from cancer. Early data suggest parents may benefit from increased support prior to the death of their child, which may then lead to improved adjustment as they transition into their local community more fully following their child's death.L719678232015-08-08 <br />