Kök Hücre Nakli Olan Hasta ve Ailelerinin Hastalık Anlatıları

Abstract

The main aim of this study was to investigate the illness narratives of parents and their families who have gone through allogeneic stem cell transplantation due to leukemia and lymphoma diseases. The narratives examined in the context of structural, contextual and dialogical analysis are discussed using the typology of illness narratives and the concepts of hierarchy, organization, roles, boundaries and subsystems of family systems theory. A total of 20 family members were interviewed face-to-face from 7 families. Narrative analsis informed by psychosocial approach was used. In the second part of the study, 8 experts working in the field of stem cell transplantation were interviewed questioning the services in stem cell transplantation units. The interviews were analysed using thematic analysis and discussed under the headings of economic problems, accommodation problem, companionship system and psychosocial support. In the narratives of the patients and their families, the idea of submission was prominent throughout. While children who wanted to be protected from the difficulties of illness and the treatment process, developed rigid boundaries with the parental system, spouses strived with multiple roles such as being the breadwinner, caregiving for children and the patient. Some caregivers were also burdened with poverty, lack of information and consultation and the negative effects of gender roles. İt was discussed that the economic support given to the individuals and their families who have gone through stem cell transplantation should be regulated according to the increasing needs of the families due to the illness and treatment. Accommodation facilities under professional care should be established inside or nearby the hospital campuses. Families should be provided hematology care education. In the end, it has been emphasized that oncology social work units should carry out family-centered services as specialized units.