ArticleEuropean child & adolescent psychiatry2019
Longitudinal effects of caregiving on parental well-being: the example of Rett syndrome, a severe neurological disorder.
Article in European child & adolescent psychiatry, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it, 38 citations in OpenAlex.
- The psychosocial impact of childhood dementia on children and their parents: a systematic review.Orphanet journal of rare diseases · 2023Pooled it
- "I felt like a lone ranger": experiences of Australian families living with KIF1A-Associated Neurological Disorder.Journal of community genetics · 2026Article
- Family quality of life in the context of Rett syndrome: insights from Brazilian families.Journal of community genetics · 2026Article
- Quality of Life and Mental Health Among Families Caring for Children with Medical Complexity: A Scoping Review.Healthcare (Basel, Switzerland) · 2026Review
- The Newborn Screening Programme Revisited: An Expert Opinion on the Challenges of Rett Syndrome.Genes · 2024Article
- Rett syndrome.Nature reviews. Disease primers · 2024Review
- Burden of illness in Rett syndrome: initial evaluation of a disorder-specific caregiver survey.Orphanet journal of rare diseases · 2024Article
- How Families Manage the Complex Medical Needs of Their Children withChildren (Basel, Switzerland) · 2023Article
- Psychopathology in mothers of children with pathogenic Copy Number Variants.Journal of medical genetics · 2023Article
- Parental stress and adjustment in the context of rare genetic syndromes: A scoping review.Journal of intellectual disabilities : JOID · 2022Article
- Improving clinical trial readiness to accelerate development of new therapeutics for Rett syndrome.Orphanet journal of rare diseases · 2022Review
- Impact of a Remotely Supervised Motor Rehabilitation Program on Maternal Well-Being During the COVID-19 Italian Lockdown.Frontiers in psychology · 2022Review
- Sleep Disorders in Rett Syndrome and Rett-Related Disorders: A Narrative Review.Frontiers in neurology · 2022Review
- Association Between Children With Life-Threatening Conditions and Their Parents' and Siblings' Mental and Physical Health.JAMA network open · 2021Article
- Need for psychiatric phenotyping in patients with rare genetic disorders.European child & adolescent psychiatry · 2021Article
- Consensus guidelines on managing Rett syndrome across the lifespan.BMJ paediatrics open · 2020Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 2 countries.
Funding
Abstract
Little longitudinal research has examined parental well-being in those with a child with specific genetic developmental disorder although the associated severe neurological impairments and multiple physical comorbidities likely place substantial burden of caregiving on the parent. We aimed to examine longitudinally the well-being of parents of individuals included in the Australian Rett Syndrome Database over the period from 2002 to 2011 using the Short Form 12 Health Survey. Residential remoteness, the child being a teenager at baseline, having frequent sleep disturbances or behavioural problems, and the type of MECP2 gene mutation were each associated with later poorer parental physical well-being scores. Being a single parent or on a low income was also associated with later poorer physical well-being, while the child having enteral feeding was associated with later poorer emotional well-being. Both the physical and emotional well-being of the parent improved if the child was living in out-of-home care. Our findings suggest that some opportunities do exist for clinicians to help optimise parental well-being. Being alert to the possibility and need for management of a child's sleep or emotional disturbance is important as is awareness of the additional likely parental burden as the child moves through adolescence into early adulthood and their need for additional support at that time. However, the findings also highlight the complex nature of parental well-being over time in parents of children with a severe neurological disorder and how they may be affected by a range of inter-related family and child factors.
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Registered trials
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