The significance of home-based portable pump chemotherapy for family caregivers to newly diagnosed patients with acute myeloid leukemia: A qualitative thematic analysis.

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study.

PURPOSE: This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. METHODS: A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy-Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. RESULTS: Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. CONCLUSION: The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. TRIAL REGISTRATION: NCT03493906.