ArticlePsychology & health
Stress, coping, and positive aspects of caregiving among caregivers of children with rare disease.
Article in Psychology & health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 18 citations in OpenAlex.
- Assessing Psychological Harms on Parents and Primary Caregivers of Children Living with a Rare Disease: A Systematic Review of the Scope and Validity of Surveys Utilized.Clinical child and family psychology review · 2025Pooled it
- Caregiver contribution to patient self‑care and quality of life among informal carers of adult patients with inflammatory bowel disease: a cross‑sectional study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Article
- Integrative Literature Review on the Lived Experiences of Parents of Children with a Rare Disease.Healthcare (Basel, Switzerland) · 2026Review
- Development, Implementation, and Preliminary Results of a Novel Social Network for Rare Disease Communities: Mixed Methods Study.JMIR human factors · 2026Article
- Stress coping theory-based nursing program enhances psychosocial adaptation in acute leukemia.BMC nursing · 2026Article
- Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study.Journal of child health care : for professionals working with children in the hospital and community · 2025Article
- Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls.Medicina (Kaunas, Lithuania) · 2025Article
- Perception of psychosocial burden in mothers of children with rare pediatric neurological diseases.Scientific reports · 2025Article
- Clinical features, disease burden and impact on quality of life in participants with mitochondrial encephalomyopathy.Frontiers in neurology · 2025Article
- A "rotating menu" of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study.SSM. Qualitative research in health · 2024Article
- Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases.Journal of clinical medicine · 2024Article
- The experience of caregiving for children with rare musculoskeletal conditions: a qualitative study in arthrogryposis multiplex congenita.Orphanet journal of rare diseases · 2024Article
- Caregiving Interactions and Behaviors in the Care of Children with Rare Genetic or Undiagnosed Conditions.Journal of child and family studies · 2023Article
- Caregiver burden in Bardet-Biedl syndrome: findings from the CARE-BBS study.Orphanet journal of rare diseases · 2023Article
- The impact of caregiving for children with chronic conditions on the HPA axis: A scoping review.Frontiers in neuroendocrinology · 2023Article
- Factors of well-being of youth with complex medical conditions from the experience of hospitalization and convalescence: A pilot study.PloS one · 2023Observational
- Links of we-talk to caregiver social network systems and health.Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43) · 2022Article
Corrections and comments
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Authors and funding
6 authors at 5 institutions in 1 country.
Funding
Abstract
objectiveCaregivers of children with rare diseases often consider caregiving to be a rewarding experience, despite high levels of burden. The present study examined associations between caregiver stress and positive aspects of caregiving (PAC); investigated associations between interpersonal coping strategies and PAC; and determined whether coping strategies moderated associations between stressors and PAC.
designSurvey data came from a study on caregivers across different caregiving conditions, including caregivers of children diagnosed with inherited metabolic conditions (
main outcome measuresPositive Aspects of Caregiving (PAC) scale.
resultsResults from generalized linear models indicated that perceived burden was not associated with PAC. Venting was negatively associated with PAC (
conclusionThese findings illuminate important differences in PAC based on the caregiving condition, and aspects of the caregiver stress process model that might be universal to caregivers. Results inform stress process theory and highlight the potential of support-based interventions for promoting PAC. Supplemental data for this article is available online at.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.