Presented by: Leigh Donovan
Enabling strong and active social support networks for parents throughout their child’s cancer trajectory and end of life may facilitate ongoing connections with a family’s social network into their bereavement, reducing the sense of isolation parents so frequently describe following the death of their child.
This multi-site study assessed 1) the professional and social support utilized by parents throughout their child’s palliative and end of life care and their bereavement, and 2) barriers and gaps to accessing support at each of these time points.
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 in Australia. One hundred and nineteen parents participated (34% interview opt in; 23% male, mean age 48 years, mean bereavement 5.6yrs, SD 3.0). Data were analyzed using SPSS22 and NVivo10.
Before their child’s death, 51% of parents indicated they would have liked more help than they received. Bereaved parents reported that their most helpful supports included: their partner/spouse (89%), friends/neighbors (92%), and other oncology and/or bereaved parents (57%). Empathic gestures (e.g. sympathy cards) were highly regarded (‘somewhat’/’very helpful’: 86%). ‘Needing to be strong for others’ was parents’ greatest barrier to accessing support before (‘often’/’always’: 80%), and following, the child’s death (‘often’/’always’78%).