The lived experiences of parents of children recently diagnosed with cancer : an interpretative phenomenological analysis

Abstract

Background: The incidence of acute lymphoblastic leukaemia is quite rare, yet it is the most common cancer diagnosis in children. The diagnosis of Acute Lymphoblastic Leukaemia involves an initial long term of hospitalisation period that is followed by continuity of care at home. The parents’ role as a care giver changes to include the daily demands of their diagnosed child. There is limited knowledge about the lived experiences and the challenges encountered by the parents following their discharge. Aim: This study aimed to explore the lived experiences of parents following the first discharge from hospital of their child who had been diagnosed with Acute Lymphoblastic Leukaemia. Research design: The study followed a qualitative research design using the approach of an Interpretative Phenomenological Analysis. Setting: Participants were recruited from the paediatric oncology hospital setting. Participants: A purposively selected sample of five mothers of children diagnosed with Acute Lymphoblastic Leukaemia was recruited. Method: Data was collected by means of individual semi-structured interviews. The interviews were transcribed and analysed as guided by the Interpretative Phenomenological Analysis approach. Rigour, trustworthiness and sensitivity to the context of the study, together with dependability and conformability were maintained throughout data collection and analysis by the provision of detailed accounts of experiences, the transperancy of the research process, and the selection of participants sharing similar experiences. Results: Six super-ordinate themes representing the parents’ experiences emerged from the data: (1) Mixed emotional cycle, (2) Relocations, (3) Daily struggles of parents caring for children with ALL, (4) The way forward, (5) A shifting perspective and (6) Supportive Encounters. Conclusion: The findings reflected the need for a hospital structured training for health professionals to be proficient in helping parents better manage the transition phase from hospital to home. This should also be followed by a continuous update of educational programmes for health professionals to deliver the correct information to parents on home education. Findings reflected also the need for more specialised health professionals such as dietitians, play therapists, specialized nurses and peadiatric psychologists to work within this setting. Additionally, the introduction of financial and community support could theoretically reduce the burdens of the parents’ encountered as a result of their child’s illness.