Nuria Rossell1, Julia Challinor2, Roy Gigengack3, Ria Reis1,4,5. 1. Amsterdam Institute for Social Sciences Research (AISSR), University of Amsterdam, Amsterdam, The Netherlands. 2. Department of Physiological Nursing, School of Nursing, University of California San Francisco, California, USA. 3. Department of Social and Cultural Anthropology, Vrije Universiteit, Amsterdam, The Netherlands. 4. Leiden University Medical Center, Leiden, The Netherlands. 5. School of Child and Adolescent Health, The Children's Institute, University of Cape Town, South Africa.
Abstract
OBJECTIVE: In El Salvador, at the only hospital offering pediatric oncology care, the number of children abandoning treatment for cancer has decreased in recent years (13%-3%). An investigation of caregivers' motives for abandonment was performed over 15 months from 2012 to 2014. Caregiver and health team perspectives on abandonment are reported using the explanatory model (EM) framework. METHOD: Semistructured in-depth interviews and in hospital participant observations were conducted with caregivers of children diagnosed with cancer, who abandoned their child's treatment or were considering abandoning, and with members of the medical team. RESULTS: Of the 41 caregivers interviewed, 26 caregivers (of 19 children) abandoned their child's treatment, returned from a series of missed appointments, or showed a risk of abandoning. Caregivers of 8 children stated that a miraculous cure was the main reason for abandoning; increasing impoverishment and misgivings toward treatment and outcomes were also mentioned. The responses of the medical team demonstrated a discordant EM for the child's cancer and treatment effects and that only biomedical treatment was effective for cure. CONCLUSIONS: The caregivers' increasing impoverishment (not only financial) and misgivings about the child's treatment caused them to reconsider their therapeutic choices and rely on their belief in a miraculous cure, thus abandoning. The caregivers and medical team's discordant EM about the child's cancer and treatment must be acknowledged and shared decision making considered, together with consistency in the strategies that currently demonstrate to be effective decreasing abandonment.
OBJECTIVE: In El Salvador, at the only hospital offering pediatric oncology care, the number of children abandoning treatment for cancer has decreased in recent years (13%-3%). An investigation of caregivers' motives for abandonment was performed over 15 months from 2012 to 2014. Caregiver and health team perspectives on abandonment are reported using the explanatory model (EM) framework. METHOD: Semistructured in-depth interviews and in hospital participant observations were conducted with caregivers of children diagnosed with cancer, who abandoned their child's treatment or were considering abandoning, and with members of the medical team. RESULTS: Of the 41 caregivers interviewed, 26 caregivers (of 19 children) abandoned their child's treatment, returned from a series of missed appointments, or showed a risk of abandoning. Caregivers of 8 children stated that a miraculous cure was the main reason for abandoning; increasing impoverishment and misgivings toward treatment and outcomes were also mentioned. The responses of the medical team demonstrated a discordant EM for the child's cancer and treatment effects and that only biomedical treatment was effective for cure. CONCLUSIONS: The caregivers' increasing impoverishment (not only financial) and misgivings about the child's treatment caused them to reconsider their therapeutic choices and rely on their belief in a miraculous cure, thus abandoning. The caregivers and medical team's discordant EM about the child's cancer and treatment must be acknowledged and shared decision making considered, together with consistency in the strategies that currently demonstrate to be effective decreasing abandonment.
Authors: Wenqi Fu; Jufang Shi; Xin Zhang; Chengcheng Liu; Chengyao Sun; Yupeng Du; Hong Wang; Chaojie Liu; Li Lan; Min Zhao; Li Yang; Burenbatu Bao; Sumei Cao; Yongzhen Zhang; DeBin Wang; Ni Li; Wanqing Chen; Min Dai; Guoxiang Liu; Jie He Journal: BMJ Open Date: 2021-06-30 Impact factor: 2.692