Inception of a pediatric cancer caregiver support group guided by parental needs

Survivorship in childhood cancers has steadily improved and increased the need for caregivers to provide a longer duration of care both in the hospital and at home. Involving parents and caregivers to voice their unmet needs could significantly impact and direct the institution of support groups.

To ascertain the need for a pediatric caregiver support group based on a survey that explored the unmet needs of caregivers of children with cancer.

Caregivers of pediatric patients (n = 17) undergoing treatment at the hospital were requested to complete our Pediatric Caregiver Psycho-social Needs Survey. The survey encompassed questions on different aspects of caregiving and the caveats felt by the caregivers. The needs were categorized into seven main domains (physical, emotional, family-related issues, spiritual, social, logistics, and information) that focused on understanding the importance and the perceived level of professional support that was expected. The data was analyzed using SPSS.

The most often reported needs were (i) emotional concerns with the majority reporting fear (58.8%), (ii) logistics-related needs for play/art-based activities (58.8%), (iii) informational needs focusing on understanding diagnosis/prognosis (47.1%), side-effects of treatment and physical changes (41.2%). Family-related needs escalated when caregivers (23.5%) looked after other ill family members at home. Caregivers (23.5%) also reported Spiritual concerns suggesting the need for religious/spiritual support in the hospital. Majority of caregivers (82.4%) expressed interest to be part of a pediatric caregiver support group. However, professional support sought for was much lesser compared to the percentage of needs/concerns expressed.

Our study highlighted the unmet needs of caregivers which included emotional, logistics-related needs, and concerns about information. Hence, the goal is to provide a unified platform through a support group that holistically can address needs and empower caregivers.