Children Receiving Chemotherapy at Home: Perceptions of Children and Parents

Abstract

The aim of this descriptive exploratory study was to determine the perspectives of parents and children with cancer on a home chemotherapy program. Qualitative analyses were used to organize data from 24 parents and 14 children into emerging themes. Themes included (1) financial and time costs, (2) disruption to daily routines, (3) psychological and physical effects, (4) recommendations and caveats, and (5) preference for home chemotherapy. When home chemotherapy was compared with hospital clinic-based chemotherapy, parents reported fewer financial and time costs and less disruption to their work and family schedules, and children reported more time to play/study, improved school attendance, and engagement in normal activities. Although some parents felt more secure with hospital chemotherapy, most found it more exhausting and stressful. At home, children selected places for their treatment and some experienced fewer side effects. Although some coordination/communication problems existed, the majority of parents and children preferred home chemo-therapy. Home chemotherapy treatment is a viable, acceptable, and positive health care delivery alternative from the perspective of parents and children with cancer.

Home care—a safe and attractive alternative to inpatient administration of intensive chemotherapies

“…Our results are in line with studies in pediatric oncology patients demonstrating that home care was perceived as less stressful than hospital care, had less impact on family life, and increased parent's involvement in their child's treatment [11,13,23,24]. Home care was also preferred by 73% of 40 evaluated adult oncology patients.…”

“…Home care has been successful in patients following chemotherapy and stem cell transplantation without increasing the risk of toxicity or infection [7][8][9][10]. Furthermore, in pediatric oncology, home care has been shown to be effective and safe and had additional psychosocial benefits for both children and caring parents [11][12][13].…”

“…Since management of chemotherapy-related side effects has improved and new, safe treatment schedules, and administration tools have been introduced [13][14][15], home care is becoming a valid alternative to hospital-based treatment of oncology patients.…”

Family Adjustment to Childhood Cancer: A Systematic Review

“…Treatment-related strains appear to be attenuated with home-based chemotherapy (Clarke-Steffen 1997;Stevens et al 2006). Although parents of children on active treatment indicate increased stress and decreased security stemming from the responsibility to implement treatment protocols and manage side effects, they prefer home treatment due to saved time and money.…”

What is the right approach to infection prevention and control for children living at home with invasive devices?

“…(9,(11)(12)(13)(14) Caring for children in their own homes has significant benefits for their quality of life, but places special demands on families, who have to deliver complex care. (15)(16)(17)(18) These children have a high rate of unplanned hospital admissions for infective complications, causing disruption to the child and their families. (19,20) Infection and its possible consequences are a source of pervasive anxiety and fear for families, given the risks associated with long-term antibiotics and vulnerability to sepsis.…”