ArticlePloS one2022
Experiencing illness as a crisis by the caregivers of individuals with Prader-Willi Syndrome.
Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it, 10 citations in OpenAlex.
- The burden of illness in Prader-Willi syndrome: a systematic literature review.Orphanet journal of rare diseases · 2025Pooled it
- "Let it be as it is": between shock and acceptance - emotional, identity, and cognitive responses to the diagnosis of neurofibromatosis type1.Orphanet journal of rare diseases · 2026Article
- Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Anxiety, Depression and Stress in Parents and Siblings of People Who Have Prader-Willi Syndrome: Morbidity Prevalence and Mitigating Factors.Journal of intellectual disability research : JIDR · 2025Article
- "In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.Journal of religion and health · 2024Article
- Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study.Scientific reports · 2024Article
- Article
- Imprinting disorders.Nature reviews. Disease primers · 2023Review
- Quality of Life in Children with Prader-Willi Syndrome and the Impact of the Disease on the Functioning of Families.International journal of environmental research and public health · 2022Article
- Depression, Anxiety of Death, and Fear of Death in Family Caregivers of People With Prader-Willi Syndrome: A Mixed Study.Global advances in integrative medicine and healthArticle
Corrections and comments
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Authors and funding
3 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe behavioural phenotype of Prader-Willi Syndrome (PWS) implies a specific emotional and social-interactive burden for the caregivers of the individuals with PWS. The aim of the study was to perform an in-depth exploratory analysis of experiences of the familial caregivers of individuals with PWS.
methodThe study was carried out using a sociological methodology of the grounded theory (qualitative research). A purposively selected sample of 20 familial caregivers of children/adults with PWS was invited to take part in individual, semi-structured in-depth interviews which included questions pertaining to coping with problems arising from the condition, including its impact on social interactions, as well as to the meanings of PWS.
resultsThe core category emerging from our analysis emphasized "experiencing PWS as a crisis". The phases in the process of experiencing PWS were specified, each of which is characterised by specific cognitive, emotional and social problems, implying relevant requirements in the care of individuals with PWS. I. Crisis in response to the diagnosis; II. Crisis in response to lack of control over the hunger of individuals with PWS; III. Crisis in response to the social milieu's failure to understand the nature of the condition; IV. Crisis in response to attempts to plan the future of individuals with PWS. The specificity of the PWS caregiver's experience is primarily determined by the need to reconstruct the entire family's lifestyle. The experiences of caregivers of PWS persons, at the time when they were available for study, had the characteristics of crisis. Moreover the psychosocial consequences of PWS were not subject to normalization and attempts to attribute any meaningful existential sense to the PWS were ineffective in the time period under scrutiny.
conclusionsIdentifying phases of the PWS experience process from the perspective of the caregivers of individuals with PWS may be used to profile interventions supporting PWS individuals' families in a manner corresponding to the flow of the illness experience.
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