The lived experience of family members who care for children with cancer: An interpretative phenomenological approach

Purpose: This study aimed to explore the lived experiences of family carers in the care of children with cancer. Method: A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Fourteen interviews were conducted with family members: mothers (n = 9), grandmothers and fathers (n = 5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. Results: Three major themes emerged from the data analysis. The first theme was the caring experience, which included three subthemes: changing priorities over time, information given about children's illness, and parents suffering due to treating irritable children. The second theme was the challenges to effective care, which illustrates the most significant challenges faced during caring, including the effects of family relations and emotional support. The final theme was around the support system; family carers found several resources to support them in their children's care, including other parents' experiences with similar diseases, the hospital environment, and their religious beliefs. Conclusions: This study informs parents and healthcare providers about the daily lived experiences of family carers. Healthcare providers can fulfil a significant role in giving emotional support and relief to family carers. However, they will need continuous practise to equip them with the communication skills they require to deal with the family carers in these difficult situations.

Automated summary

This study explored the lived experiences of family carers in the care of children with cancer using a phenomenological hermeneutic approach. Three major themes emerged: caring experience, challenges to effective care, and support system. Healthcare providers can play a significant role in giving emotional support and relief to family carers, but may need further practice to develop communication skills for dealing with them in challenging situations.