The Isolation Experience of Arab-Muslim Pediatric Patients during and Post-Bone Marrow Transplant: A Dyadic Parent-Child Photovoice Study

Background: Bone Marrow Transplant (BMT) is a complex medical procedure which involves hospitalization lasting for at least between six weeks to a year depending on the reaction to the procedure. Children who undergo BMT are required to be in isolation and under multiple restrictions also following their discharge from the hospital. Specifically, they are required to decrease their social interactions for up to a year after BMT.. This kind of isolation may have implications on their mental health, well-being, and quality of life, especially during the COVID-19 era.. Despite these implications, research remains limited.

Method: The current study was conducted in Israel, using a qualitative methodology, utilizing the photovoice method. Photovoice in this study relied on two qualitative streams: a) the phenomenological approach through examining children's experience in isolation in BMT, and b) the community-based participatory research approach, which aims to promote social justice and empower research participants regarding the topic at the center of the research. 16 participants took part in the study - 8 dyads of parents and children. Children were asked to take pictures that capture their challenges and their ways of coping during their isolation. Then, in-depth semi-structured interviews were conducted with the children and their parents separately, using the photovoice protocol as a basis for the interview. Consent was obtained from both the children and their parents, and the study was approved by the Helsinki Committee.

Results: Analysis relied on the thematic approach and raised four main themes: 1) The first theme focused on the unique hospital characteristics that shape the child’s isolation experience. This theme included time, space, territory, and the humane dimensions. 2) The second theme focused on the resilience factors in the various aspects of life which help children to cope with the isolation experience. These aspects included: the child’s inner strength, social and familial support, the professional community, and the technological means. 3) The third theme shed light on the loneliness that children experience during and after BMT. In addition, this theme focused on the impact of the coronavirus pandemic on the children's isolation experience. 4) Finally, the fourth theme emphasized children’s and parents’ suffering during the child’s isolation, during and after BMT.

Discussion: Two main core concepts informed the discussion. The ecological and context-informed theories shed light on the contexts that shape children’s isolation experience, including the hospital, home, Islamic religion, and COVID-19 contexts. The second concept focused on the solutions and resilience factors that children and parents adopted in order to cope with the challenges revolving the child’s isolation, which were This was examined by the salutogenic and the existential approaches. This study contributes to several bodies of research including social work, health, and psychological research. It also provides valuable and applicable information to medical and paramedical staffs regarding children's feelings and experiences and offers recommendations to improving and supporting the child’s isolation experience in the hospital and at home after BMT.