Physical and mental wellbeing of parents of children with Down syndrome in Ireland

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O'Sullivan, Emmet
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Community-Academic Research Links, University College Cork
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Introduction: At a prevalence of 1 in 700 births, Down Syndrome (DS) is the most common chromosomal birth defect, with Down Syndrome Ireland (DSI) supporting 3,500 people with DS. Having a child with an intellectual disability is associated with increased levels of depression, anxiety, stress, and poorer reported general health. Interventions to support parents should focus on specific factors thought to exacerbate parental stress. To date, no studies were found in the literature examining these parameters in an Irish population. Objectives: This study aimed to determine the current stress and wellbeing levels of parents of children with DS living in Ireland, to establish predictors for these wellbeing parameters, to identify supports desired by parents for their health and wellbeing, and to make recommendations to DSI regarding the issue of parental wellbeing and where to allocate resources. Methods: An online self-reported questionnaire (n=226) was created containing the Medical Outcomes Study Short Form (SF-20), the Depression Anxiety Stress Scales (DASS-21), a subset of the Carer Wellbeing and Support Questionnaire (CWS), and demographics. The questionnaire was distributed via DSI by email and through social media sites. Analysis: All analysis was computed via SPSS 26.0. Total and subcomponent scores were compared to normative data from user manuals via Independent Sample T Tests. Predictive factors were established via Multiple Regression Analysis. Results: Parents of children with DS scored significantly higher on the DASS-21 Depression (p<0.001), Anxiety (p<0.001), and Stress (p<0.001) subscales. Almost 50% reported depressive symptoms, and almost 17% had severe-extremely severe symptoms. Just over 35% reported anxiety, and 10% had severe anxiety. Stress levels were above normal in 44% and severe in 13%. Physical health scores were not negatively impacted. Employment status and medical status of the parent were the most important negative predictors of Depression, Anxiety, and Physical Health scores. Medical conditions in the parent and young age of the child were the most predictive factors of Stress. Conclusion: Parents of children with DS experience higher levels of depression, anxiety, and stress than average, but report better physical wellbeing. Unemployed parents experience the highest levels of depression and anxiety. Parents of children aged 0-5 years experience the highest levels of stress. Parents rate respite, speech therapy and psychological support as their top three priorities when seeking support.
Down syndrome in Ireland , DS , Parents of children with Down syndrome
O’Sullivan, E. (2022) Physical and mental wellbeing of parents of children with Down syndrome in Ireland. Cork: Community-Academic Research Links, University College Cork.
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© 2022, Emmet O’Sullivan.