18 research outputs found

    'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study.

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    Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups' unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice

    The relationship between mindful parenting and distress in parents of children with an autism spectrum disorder

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    Parenting a child with an autism spectrum disorder (ASD) can be highly challenging. Extensive behaviour problems associated with the disorder may contribute to poor psychological health amongst parents. It is important to investigate factors that are related to parental well-being and that may be amenable to intervention. The current study investigated mindful parenting amongst parents of children with ASD. Participants (N = 28) completed a questionnaire about their child's behaviour problems, parental stress, depressive and anxiety symptoms and mindful parenting, along with open-ended questions about mindful parenting practices and general parenting experiences. Higher levels of mindful parenting were related to lower levels of depressive symptoms and stress. There was no relationship between mindful parenting and anxiety symptoms. Higher levels of child behaviour problems were associated with more severe parental depressive symptoms, anxiety symptoms and stress and lower levels of mindful parenting. Contrary to expectations, preliminary analyses using partial correlations indicated that mindful parenting did not mediate the relationship between child behaviour problems and parental distress. Thematic analysis of the open-ended mindful parenting questions yielded four main themes: examples of mindful parenting practices, specific strategies, advantages of mindful parenting and difficulties in adopting these practices. Three themes regarding general parenting experiences emerged: parent and family problems, positive feelings towards the child and parenting approaches. Mindful parenting may have benefits for parents' psychological health. Further research exploring the effectiveness of mindful parenting interventions is warranted. © 2013 Springer Science+Business Media New York.Michelle Beer, Lynn Ward, Kathryn Moa
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