Care performed by family caregivers of children submitted to hematopoietic stem cell transplantation.
Ingrid Meireles Gomes, Maria Ribeiro Lacerda, Ana Paula Hermann and 3 others
PMID 30698219WHAT IT FOUND
Family caregivers of children after stem cell transplant described eight distinct home care tasks, from sterilizing food and managing complex medication schedules to enforcing isolation.
They reported high anxiety about missing complications and difficulty balancing strict hygiene with encouraging the child's independence.
Key findings
01Caregivers identified eight specific areas of home care: administering medications, cleaning, water and food intake, body care, protective isolation, emotional support, self-care, and facing complications.
02Food and water intake was described as the most difficult care task because children often refused the restricted, cooked-only diets required post-transplant, forcing caregivers to adapt the entire household's diet.
03Caregivers experienced constant fear of missing signs of complications, leading to hyper-vigilance such as checking the child's body daily or demanding scans for minor symptoms like headaches.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study was conducted in a single center in Brazil, which may limit the generalizability of the cultural and systemic aspects of the care experience. The sample was restricted to pediatric caregivers, so findings may not apply to those caring for adult HSCT patients. As a qualitative study, it describes experiences and themes rather than measuring outcomes or the effectiveness of care.
Declared interests
The study was supported by the Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq), Brazil. The paper is extracted from a doctoral dissertation.
The easy way to misread this
Do not interpret the caregivers' high levels of anxiety and difficulty with tasks like feeding as evidence that the current standard of care is ineffective. These findings describe the subjective burden and complexity of the home environment, not necessarily failures in clinical management.