ArticleThe Journal of allergy and clinical immunology2019
Supporting caregivers during hematopoietic cell transplantation for children with primary immunodeficiency disorders.
Article in The Journal of allergy and clinical immunology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 12 citations in OpenAlex.
- Supporting Medication Adherence in Pediatric Patients Undergoing Hematopoietic Stem Cell Transplant Using the BMT4me mHealth App: Mixed Methods Usability Study.JMIR cancer · 2025Article
- Experiences of burden and needs in caregivers with pediatric noninfectious uveitis: a qualitative study.BMC nursing · 2024Article
- Anxiety and Depression in Parents of Children Undergoing Hematopoietic Stem Cell Transplant (HSCT).Advances in experimental medicine and biology · 2023Article
- Severe Combined Immunodeficiency: Knowledge and Information Needs Among Healthcare Providers.Frontiers in pediatrics · 2022Article
- Care of Children with DiGeorge Before and After Cultured Thymus Tissue Implantation.Journal of clinical immunology · 2021Article
- Audit of Psychosocial and Palliative Care Support for Children Having Allogeneic Stem Cell Transplants at the New Zealand National Allogeneic Transplant Centre.Children (Basel, Switzerland) · 2021Article
Corrections and comments
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Authors and funding
11 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundCaregivers of children with primary immunodeficiency disorders (PIDs) experience significant psychological distress during their child's hematopoietic cell transplantation (HCT) process.
objectivesThis study aims to understand caregiver challenges and identify areas for health care system-level improvements to enhance caregiver well-being.
methodsIn this mixed-methods study caregivers of children with PIDs were contacted in August to November 2017 through online and electronic mailing lists of rare disease consortiums and foundations. Caregivers were invited to participate in an online survey assessing sociodemographic variables, the child's medical characteristics, psychosocial support use, and the World Health Organization-5 Well-Being Index. Open-ended questions about health care system improvements were included. Descriptive statistics and linear multivariate regression analyses were conducted. A modified content analysis method was used to code responses and identify emergent themes.
resultsAmong the 80 caregiver respondents, caregivers had a median age of 34 years (range, 23-62 years) and were predominantly female, white, and married with male children given a diagnosis of severe combined immune deficiency. In the adjusted regression model lower caregiver well-being was significantly associated with lower household income and medical complications. Challenges during HCT include maintaining relationships with partners and the child's healthy sibling or siblings, managing self-care, and coping with feelings of uncertainty. Caregivers suggested several organizational-level solutions to enhance psychosocial support, including respite services, online connections to other PID caregivers, and bedside mental health services.
conclusionsCertain high-risk subpopulations of caregivers might need more targeted psychosocial support to reduce the long-term effect of the HCT experience on their well-being. Caregivers suggested several organizational-level solutions for provision of this support.
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