Exploring the experiences of pediatric cancer survivors in Karachi, Pakistan

Despite the fact that cancer s the leading cause of death in the childhood population, the cure rate among the pediatric cancer patients is fairly high. More than 75% of pediatric cancer patients survive every year in Pakistan. Since such a large number of individuals survive from the catastrophic disease which temporarily cuts them off from their social life and education for a considerable amount of time and completely alters their normal routine, there is a dire need to explore what their individual experiences were at the time of diagnosis, during the treatment andafter the treatment. This study was conducted with an aim to explore the experiences of cancer survivors, not only to add to the existing body of knowledge of pediatric cancer care but also to investigate the post treatment issues of pediatric cancer survivors in the remission period. Methods: A qualitative descriptive exploratory design was used which enrolled eight pediatric cancer survivors in a tertiary care hospital in Karachi, Pakistan. Purposive sampling was used to recruit the participants. The data was collected by interviewing four male and four female pediatric cancer survivors and data analysis was done through content analysis through which categories and themes were generated. Findings: Four themes with categories and subcategories were generated from the findings of this study. The themes include reactions of cancer survivors, impaired functioning due to chemotherapy, experiences at the end of treatment, and support during their illness. After hearing the acute shock of being diagnosed with cancer, the participants identified the period of receiving chemotherapy as the most challenging, due to frequent admissions, prolonged hospitalization, devastating side effects of chemotherapy, and emaciation of body due to disease. Most of the participants had resumed their education after the treatment, but the fear of stigmatization and concerns about the career kept the participants from disclosing their medical history to their class fellows and friends. The post treatment side effects like fatigue and issues related to femininity in female participants were potential reasons of persistent worry in the period of survivorship. Conclusion: Being diagnosed and then being successfully treated for cancer has a long lasting impact on the life of a child. Findings of this study revealed the experiences of cancer survivors during and after the treatment. These experiences are shared by both genders and encompass the challenges, coping strategies, and support system during the entire experience of illness. Findings include the recommendations of the survivors for their family members, health care professionals and also for the newly diagnosed individuals. Health care planning for cancer patients should be holistic, enriched with lesson learned from the lived experiences of the patients to address their needs at any level of the treatment and survivorship. Sociocultural outcomes like not disclosing the diagnosis to children, avoidance in using the word cancer by parents and physicians, and the quality of life issues of survivors have unique implications for future research. Finding of the study will also help oncology nurses and physicians to develop care plan for pediatric cancer patients and survivors at the institutional level