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Maternal parenting stress in families with a child with Angelman syndrome or Prader-Willi syndrome
- Authors:
- WULFFAERT Josette, SCHOLTE Evert M., BERCKELAER-ONNES Ina A.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 35(3), September 2010, pp.165-174.
- Publisher:
- Taylor and Francis
To assess maternal parenting stress mothers of 24 children with Angelman syndrome (AS) and 23 children with Prader-Willi syndrome (PWS) completed the Nijmegen Parenting Stress Index-Short (NPSI-S), the Dutch version of the Developmental Behaviour Checklist-Primary Carer, and the Vineland Screener 0-12 years assessment instruments. Children were aged between 2 and 12 years and were living at home. Maternal parenting stress was coded as high in 58% of mothers with a child with AS and 26% of mothers with a child with PWS. For both syndromes no relationship existed with the child’s gender, age or behaviour problems. In PWS there was no effect on level of functioning. Overall, more mothers with a child with AS perceived high parenting stress. When children showed low levels of behavioural problems this difference was contained. However, when children exhibited severe behavioural problems, parenting stress was the same for both syndromes. The authors conclude that the findings suggest that professional support is needed for families with a child with AS because stress levels are high in a large proportion of mothers, which can have a negative influence on parenting behaviour. In PWS the need for support is more prominent when the child exhibits substantial behavioural problems.
Enabling carers to access specialist training in breakaway techniques: a case study
- Authors:
- GREEN T., WRAY J.
- Journal article citation:
- Journal of Learning Disabilities for Nursing Health and Social Care, 3(1), March 1999, pp.34-38.
This article explores the experience of one family, whose child had Prader-Willi Syndrome and severe behavioural difficulties, and the process undertaken to access specialist training in 'Breakaway' training. Prader-Willi syndrome has been associated with a range of behavioural difficulties including hyperphagia and food preoccupation, temper tantrums, stubbornness, lability, impulsivity, argumentativeness, depression, anxiety and repetitive behaviours. To ensure safety of both the parents and the child, access to training in 'Breakaway techniques' for the carers was procured, at the carers request. This paper concentrates upon the difficulties encountered during this process, both for the family and the professionals involved.