Home-Based Pediatric Cancer Care: Perspectives and Improvement Suggestions From Children, Family Caregivers, and Clinicians

Abstract

PURPOSE: Although the hospital remains the dominant site for delivering most pediatric cancer care, home-based care is increasingly provided. To effectively deliver comprehensive, relevant, and acceptable care in children's homes, the voices of these key informants must be considered. We examined the views of children with cancer, their family caregivers, and clinicians on home-based cancer care to identify necessary strategies to improve the delivery of care. METHODS: Children with cancer, their family caregivers, and multiprofessional clinicians who provide care at a tertiary pediatric care center or in the community participated in audio-recorded, semistructured interviews in French and English. Interviews were conducted until data saturation in each participant group was achieved. Interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen children, 20 family caregivers, and 22 clinicians participated. Home-based care was endorsed as a means to improve child health-, family social- and financial-, and system-level outcomes. The success of a home-based model is built on care that addresses child and family informational, treatment and care, material, and psychosocial needs. Mechanisms to improve care include enhanced homecare agency-hospital-family communication, training for homecare nurses in pediatric cancer care, virtual solutions, and an expanded breadth of services provided in-home. Child-, family-, and system-related factors affect the delivery of optimal home-based care. CONCLUSION: Children, families, and clinicians value a model of pediatric cancer care that incorporates home-based services. The insights of these key informants should be reflected in the principles that become the basis of home-based cancer care best practices.

Co-designing a digital health app to manage pain in young children with cancer: report from the generative design phase of intervention development

“…Individual in-hospital, telephone, or online face-to-face semi-structured interviews were conducted by trained research team members (AC, HGP, LBT) with no previous relationship to participants. Our interview guide was based on the currently developed Pain Squad+ pain management app for adolescents with cancer (19) and a study of salient home-based pediatric cancer care issues (20). We audio-recorded all interviews and handwritten field-notes were taken.…”

“…We employed a purposive maximum variation sampling strategy with the aim of including parents who varied in age, sex, ethnicity, and their child's diagnosis, and clinicians who varied by healthcare profession. management app for adolescents with cancer (19) and a study of salient home-based pediatric cancer care issues (20). We audio-recorded all interviews and handwritten field-notes were taken.…”

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences

“…9,16,17 Previous research in pediatric home-based end-oflife care has primarily focused on either the experiences of the parents [18][19][20][21][22][23] or the professionals, 15,[24][25][26][27] with only few previous studies combing these perspectives. [28][29][30] However, none of these had a specific focus on the collaboration between the family and professionals across health care sectors. Accordingly, to ensure the delivery of high-quality care at home that addresses the child's and family's needs, we lack an integrated, comprehensive understanding of the collaboration, from the perspectives of all the involved parties.…”

One Hundred Times Better, at Home in Our Own Beds: Implementation of Home Intravenous Hydration After Chemotherapy in Children With Cancer

“…One of the most frequent reasons for repeated and prolonged hospitalization of children with cancer is the administration of post-hydration to avoid toxicities after chemotherapy (Lippert et al, 2017). These hospitalizations are stressful and disruptive for families, and negatively impact family finances, routines, sleep, and schooling, contributing to poorer quality of life for the child, siblings, and parents (Jibb et al, 2021; Ranney et al, 2020; Traube et al, 2020; Tsimicalis et al, 2018). At the same time, the health system is also burdened with an ever-increasing demand for beds, resources, and finite capacity (Bartholomew et al, 2018).…”

“…Consequently, along with broader health systems changes, home care programs are increasingly considered an option for the delivery of many aspects of cancer care (Jibb et al, 2021; Kok et al, 2019; Lippert et al, 2017). Advances in Computerized Ambulatory Drug Delivery (CADD) pump technologies have expanded the ability to move the administration of intravenous (IV) infusions from the hospital to the home setting and are now commonplace in the treatment of adults with cancer (Comerford & Shah, 2018; Do & Yeh, 2021; Lee et al, 2010).…”