Children With Acute Lymphoblastic Leukemia And Families: Focus Group Study Of Their Unmet Needs

Background: The impact of pediatric oncology is psychosocially and physically profound. Children and their families have problems coping with the stresses of treatment, surgery, chemotherapy, and radiation. However, qualitative research incorporating the phenomenological experiences of children and their caregivers and professionals dealing with such cases in explaining the fabrics of trauma they handle especially in Indian socio-cultural set up is needed. Purpose: To study the needs and challenges faced by children with cancer and their families and professionals using Focused Group discussions (FGD) approach.

Methods: A total of 64 participants participated across eight FGDs: 4 FGDs with parents of children with ALL (n=31); 1 FGD with professionals working in the field of cancer (n=10) and 3 FGDs with children with ALL (n= 23).

Results: Three major categories of information emerged during analyses: (1) Needs and challenges faced by the participants; (2) Factors moderating influence of challenges; (3) Technical suggestions by experts highlighting ways to address challenges. 5 Domains of challenges emerged namely: Lack of awareness, Cognitive problems, psychosocial issues, physical problems and socio emotional & behavioral problems. Discussion on the emerged themes and sub-themes has been done in the light of global literature, existing theoretical frameworks, and cultural scenario of India.

Conclusion: No longer considered an inevitably fatal disease, childhood cancer nonetheless presents many challenges for children and families. An effective and culturally sensitive psychosocial support for patients and their families during and post treatment, in addition to medical therapy, is strongly recommended.