Challenges of Parents While Providing Complex Medical Care at Home to Children With Cancer: A Cross-Sectional Convergent Mixed Methods Study.
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AIM: To explore challenges parents of children with cancer encounter while providing complex medical care at home. METHODS: Design: Cross-sectional convergent mixed-methods study. INSTRUMENTS: Questionnaire and open interviews that mirrored and complemented each other. RESULTS: Parents (n = 32), with no prior medical training, were expected to remain constantly vigilant as they monitored and managed rapidly changing situations. Regardless of time from diagnosis, they detected a mean of 3.3 ± 1.4 (0-6) symptoms, reported administering up to 22 daily medications, including cytotoxics, narcotics and injections, and dealt with many related challenges. Parents described needing responsive communication channels, especially when dealing with bleeding and infection emergency situations during off-hours. CONCLUSIONS: Findings highlight the constantly shifting demands when managing a child with cancer at home. Educational programmes that address parental needs throughout treatment, tailored to protocol changes and individual circumstances, should be expanded and further developed. PATIENT CARE IMPLICATIONS: Parents need continual education regarding home management throughout their children's illness and treatment. IMPACT: This study addresses challenges parents of children with cancer encounter while providing complex medical care at home. The findings demonstrated that parents, responsible for administering numerous medications via various routes and managing symptoms and side effects, did not feel confident performing these tasks regardless of time from diagnosis. Nurses should adapt ongoing parental education regarding complex medical tasks, symptoms, side effects, emergency detection and management for children with cancer at home. The study adhered to the Mixed Methods Appraisal Tool (MMAT) and STROBE reporting method. PATIENT CONTRIBUTION: Parents of children with cancer participated in the design and questionnaire validation.