Comparing the needs of supportive care for families and patients with pediatric cancer: A perspective of patients, caregivers and oncology health professionals

Abstract

The pediatric cancer cases diagnosed each year is increasing at a rapid rate. With high health risks and infant mortality associated to pediatric cancer, it is crucial to recognize educational and psychosocial support among patients and caregivers to alleviate care burden. To provide them with intensive supportive care in the initial phase and equipping them to deliver specialized treatment is valuable to the child health. Thus, a qualitative and exploratory study was conducted at a Private-Tertiary Care Hospital in Karachi. Through purposive sampling, participants (N=10) were selected to conduct in-depth interviews. The data was analyzed via Qualitative content analysis method through manual and using NVIVO 11 software. The themes were constructed from the categories emerged from the data codes. The result signifies four themes that indicate stressful experience among family and children with newly diagnosed pediatric cancers substantially require mental health professionals for emotional strength, there is utmost necessity of a multidisciplinary team to increase their health literacy, inadequate educational support due to limited access to resources, and insufficient psychosocial support system with healthcare setting. The findings also highlight that child’s level of understanding of diseases, language barrier, and financial crisis also impede support provision. The initial phase of childhood cancer demands appropriate individualized educational psychosocial interventions, psychological assistance to improve coping responses, and increased exposure of social support groups in assisting patients and families. Formulating new policies, need-focused services, psychoeducation, and future research are discussed.