Abstract
Life as a family caregiver of patients with cancer can be emotionally and practically challenging. Little is known of whether home-based chemotherapy of patients with acute myeloid leukemia places excessive pressure on family caregivers or decreases their burden. To explore the significance of home-based portable pump chemotherapy for family caregivers of patients newly diagnosed with acute myeloid leukemia. An explorative qualitative design using dyadic and individual semi-structured interviews with family caregivers and patients were followed by thematic analysis. Purposive sampling was used regarding gender, age, and distance to the hospital. At each interview, we were teams of one researcher and one clinical nurse specialist from the hematology department. The derived themes were predominately descriptive, based on patterns in the data. Five couples participated, (aged 39-72 years). Three themes were identified: 1) Going home. 2) Responsibilities due to the pump and leukopenia. 3) The shadow of the life-threatening disease. The pump was a minor concern to the family caregivers seen in the light of the life-threatening disease. Home-based treatment was a relief but the responsibilities due to leukopenia demanded the caregivers' resources. The fear of losing the patient and the burdens of dealing with leukopenia suppressed the family caregivers' sense of load due to the portable pump treatment. The findings underline the importance of healthcare professionals recognizing family caregivers' sense of burden and prioritizing sufficient support and education in order to enhance the everyday life of both patient and family caregiver.
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