Background:
Survival of children treated for osteosarcoma across India has improved from just 44% in 2001 (Chennai only) to 88.6% in 2016. Advances in treatment (chemotherapy, limb salvage surgery, or limb amputation) impact patients' ability to work, and recreational activities. However, little attention has been given to the psychosocial issues of these children.
Aim:
The present study aimed to explore caregivers' perception of psychosocial issues of pediatric osteosarcoma patients.
Methods:
This qualitative study used funnel approach with convenience sampling to interview primary caregivers (N=8) of pediatric osteosarcoma patients (receiving treatment at the regional cancer centre in Chennai). There were no exclusions based on sex, disease stage, treatment status, or socio-economic status. In-depth interviews were carried out using four semi-structured questions to guide the discussion of psychosocial issue faced by patients either current or future. Interviews were audio-taped, transcribed verbatim, and analysed using thematic analysis. Statements from transcripts were categorized.
Results:
Participants were all parents (mostly mothers) with mean age 35.8 years and the patients they cared for had a mean age of 14 years. Themes identified were: 1) medication and treatment effects; 2) uncertain prognosis; 3) fear of uncertainty; 4) effect on education and activities; 5) restricted functioning; 6) social stigma and isolation; and, 7) social relationships. The psychosocial issues in the present were stressful treatment, physical weakness, and reintegration with normal life and school functioning. Those issues of the future were fear of disease recurrence and death, anxiety about social stigma and isolation and restricted functioning.
Conclusion:
Findings from this study suggest a need for future studies that assess patients directly. Interventions can be designed to lessen the psychosocial problems and improve rehabilitation care for osteosarcoma patients and their primary caregivers.