ArticleJournal of inherited metabolic disease2013
Parental social support, coping strategies, resilience factors, stress, anxiety and depression levels in parents of children with MPS III (Sanfilippo syndrome) or children with intellectual disabilities (ID).
Article in Journal of inherited metabolic disease, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 4 of them syntheses that pooled it.
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Who cites it
32 citing papers in PubMed, 4 syntheses or guidelines pooled it, 79 citations in OpenAlex.
- The psychosocial impact of childhood dementia on children and their parents: a systematic review.Orphanet journal of rare diseases · 2023Pooled it
- A systematic review and integrative sequential explanatory narrative synthesis: The psychosocial impact of parenting a child with a lysosomal storage disorder.Journal of inherited metabolic disease · 2022Pooled it
- Resilience in Familial Caregivers of Children with Developmental Disabilities: A Meta-analysis.Journal of autism and developmental disorders · 2020Pooled it
- Symptoms of Autism Spectrum Disorder (ASD) in Individuals with Mucopolysaccharide Disease Type III (Sanfilippo Syndrome): A Systematic Review.Journal of autism and developmental disorders · 2017Pooled it
- Journaling as reinforcement for the resourcefulness training intervention in mothers of technology-dependent children.Applied nursing research : ANR · 2016Trial
- The impacts of caring for children with inherited metabolic diseases for families: a cross-sectional study.Orphanet journal of rare diseases · 2026Article
- Impact of regular physiotherapy intervention on the function and quality of life of pediatric patients diagnosed with Mucopolysaccharidosis.Molecular genetics and metabolism reports · 2026Article
- Evaluation of the resilience status of children with inherited metabolic disorders and the levels of their mothers' burnout and resilience.BMC pediatrics · 2026Article
- Mediation of anxiety and coping strategies between severe discipline and interparental conflict with parenting stress.Heliyon · 2025Article
- Being the Mother of a Special Child: Resilience and Marital Adjustment in Mothers of Children with Autism Spectrum Disorder.Psychiatry and clinical psychopharmacology · 2024Article
- Rare neurodevelopmental conditions and parents' mental health - how and when does genetic diagnosis matter?Orphanet journal of rare diseases · 2024Article
- Behaviours and psychological symptoms of childhood dementia: two cases of psychosocial interventions.Palliative care and social practice · 2024Article
- Social support in parents of children with neurodevelopmental disorders.International journal of developmental disabilities · 2024Article
- Sanfilippo syndrome: consensus guidelines for clinical care.Orphanet journal of rare diseases · 2022Review
- Assessment, pharmacological therapy and rehabilitation management of musculoskeletal pain in children with mucopolysaccharidoses: a scoping review.Orphanet journal of rare diseases · 2022Article
- Sanfilippo Syndrome: Optimizing Care with a Multidisciplinary Approach.Journal of multidisciplinary healthcare · 2022Review
- Self-efficacy and positive coping mediate the relationship between social support and resilience in patients undergoing lung cancer treatment: A cross-sectional study.Frontiers in psychology · 2022Article
- Parent Experiences of Sanfilippo Syndrome Impact and Unmet Treatment Needs: A Qualitative Assessment.Neurology and therapy · 2021Article
- Evaluating strategies to manage and endure challenging behaviors in mucopolysaccharidoses.Orphanet journal of rare diseases · 2021Article
- Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism.Molecular genetics and metabolism reports · 2020Article
Corrections and comments
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Authors and funding
8 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Mucopolysaccharidosis type III (MPS III, Sanfilippo syndrome) is a lysosomal storage disorder, caused by a deficiency in one of four enzymes involved in the catabolism of the glycosaminoglycan heparan sulphate. It is a degenerative disorder, with a progressive decline in children's intellectual and physical functioning. There is currently no cure for the disorder. To date there is a paucity of research on how this disorder impacts parents psychological functioning. Specifically, research in the area has failed to employ adequate control groups to assess if the impact of this disorder on parents psychological functioning differs from parenting a child with intellectual disability (ID). The current study examined child behaviour and parental psychological functioning in 23 parents of children with MPS III and 23 parents of children with ID. Parents completed postal questionnaires about their child's behaviour and abilities and their own psychological functioning. Parents of children with MPS III reported fewer behavioural difficulties as their child aged, more severe level of intellectual disability, and similar levels of perceived social support, coping techniques, stress, anxiety and depression levels as parents of children with ID. Both groups of parents scored above the clinical cut off for anxiety and depression. Parents of children with MPS III rated themselves as significantly less future-orientated and goal directed than parents of children with ID. Services should develop support packages for parents of children with MPS III that incorporate an understanding of the unique stressors and current-difficulty approach of this population. Future research should examine gender differences between parental psychological functioning, using mixed qualitative and quantitative approaches, and utilise matched developmental level and typically developing control groups.
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