ArticleFrontiers in psychology2019
The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions.
Article in Frontiers in psychology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 71 papers, 4 of them syntheses that pooled it.
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Who cites it
71 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- The burden of Alagille syndrome: uncovering the potential of emerging therapeutics - a comprehensive systematic literature review.Journal of comparative effectiveness research · 2025Pooled it
- A Systematic Review of Methods and Practice for Integrating Maternal, Fetal, and Child Health Outcomes, and Family Spillover Effects into Cost-Utility Analyses.PharmacoEconomics · 2024Pooled it
- Children with a rare congenital genetic disorder: a systematic review of parent experiences.Orphanet journal of rare diseases · 2022Pooled it
- Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life.International journal of environmental research and public health · 2021Pooled it
- Exploring the role of fathers' preoperative preparation in reducing anxiety and enhancing self-efficacy before pediatric open-heart surgery.BMC psychology · 2026Trial
- The rare disease tree: adolescent voices, family narratives, and health professionals' views in Greece.European journal of pediatrics · 2026Article
- The impacts of caring for children with inherited metabolic diseases for families: a cross-sectional study.Orphanet journal of rare diseases · 2026Article
- Article
- Integrative Literature Review on the Lived Experiences of Parents of Children with a Rare Disease.Healthcare (Basel, Switzerland) · 2026Review
- Coping with the challenges of caregiving: A qualitative exploration of the experiences of family caregivers of children with rare diseases in South Africa.Journal of genetic counseling · 2026Article
- 'If You Don't Fight for Yourself, No One Else Will': An In-Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Social support and maternal caregiving burden in families of children with Angelman syndrome in China: the mediating role of self-stigma.BMC psychology · 2026Article
- Perceptions of parents with children six or younger on adhering to the well-child care visit schedule.BMC pediatrics · 2026Article
- Navigating rare disorder healthcare in Aotearoa New Zealand: an interpretative phenomenological analysis.Frontiers in health services · 2026Article
- Adaptation of Parental Perception of Uncertainty Scale (PPUS): A psychometric study in a genetic research center in Indonesia.Belitung nursing journal · 2026Article
- Experiences of stigmatization and its impacts among individuals living with hereditary diseases and family members in Portugal: an exploratory study.Journal of community genetics · 2025Article
- Capability wellbeing of parents caring for children with rare diseases: a national cross-sectional study.BMC public health · 2025Article
- "The American journal of hospice & palliative care · 2025Article
- Experiences and Hope in Caregivers of Children With Aicardi Goutières Syndrome.Journal of child neurology · 2025Article
- Caregiver burden of carers of children with cerebral palsy in selected hospitals, Southwestern Nigeria.BMC nursing · 2025Article
11 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Family caregiving is a growing phenomenon with the increased prevalence of chronic illness and shorter hospitalizations. Rare diseases pose significant challenges not only to patients living with these kinds of pathologies but also to those who care for these patients. The caregiving role has specific characteristics. The present work aims to increase knowledge of the challenges that are common or specific to fathers and mothers of children diagnosed with a rare disease. Moreover, the paper analyses the kinds of social support they experience according to gender. A descriptive study was conducted using grounded theory methodology. A semi-structured interview with open-ended questions was conducted with 15 parents of children with a rare disease. The interview was organized into three main areas: personal experiences in caring for a child with a rare disease, family changes and perceived social support. The transcriptions were analyzed using NVivo 11 software. From data analysis, themes emerged regarding the challenges shared by fathers and mothers, but some aspects also emerged that were gender-specific. The analyses of differences between mothers' and fathers' narratives showed that there is a specific experience of the impact that caregiving has on parents' relationships with their jobs and on their worries. Self-help group is the main source of social support for all respondents. We discuss these findings in relation to possible appropriate specific interventions and support for family caregiving.
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