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    Self-advocates with Down syndrome research the lived experiences of COVID-19 lockdowns in Aotearoa New Zealand
    (John Wiley and Sons Ltd, 2023-03) Vaccarino F; Vaccarino Z; Armstrong D; Borkin E; Hewitt A; Oswin A; Quick C; Smith E; Glew A
    BACKGROUND: Individuals with Down syndrome are particularly vulnerable to COVID-19 because they are recognised as significantly immunocompromised. Yet their voices regarding their lived experiences of pandemic lockdowns have not been sought or heard. AIM: This study aims to describe the lived experiences of people with Down syndrome during the pandemic lockdowns in Aotearoa New Zealand to add evidence in order to inform systemic advocacy. METHOD: A mixed-methods approach positioned within an inclusive research paradigm was used, in which a group of self-advocates with Down syndrome co-designed a structured interview schedule and conducted 40 face-to-face interviews. Key themes were identified by using content analysis. RESULTS: Despite the difficulties associated with lockdowns and participants not receiving their usual supports and having to make significant adjustments, they remained positive, adapted well, and demonstrated a high level of resilience and adaptability. CONCLUSIONS: The findings add to the limited research on the lived experiences of people with Down syndrome during pandemic lockdowns. This research has given them a voice to contribute to policy, government initiatives, and service providers; particularly on issues around support during lockdown and staying connected with others.
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    My sibling and I : exploring the experiences and coping strategies of younger siblings of individuals with Down syndrome : a thesis presented in partial fulfilment of the requirements for the degree of Masters of Arts in Psychology at Massey University, Albany, New Zealand
    (Massey University, 2014) Pumal Singh, Amarit Kaur
    Down syndrome is a lifelong condition which impacts each family member in unique ways. Yet, with numerous studies focused on parental coping, little is known about the meanings siblings attach to the relationship they share. This study aims to investigate the personal experiences and coping strategies of younger siblings of individuals with Down syndrome. Three siblings aged between 17 and 22 years were interviewed to gather data on their experiences and coping strategies. The interviews were recorded and transcribed for analysis. Data was analysed using Thematic Analysis. Findings suggest four major themes and eight emotional states. The four themes identified are Blurred ordinal roles, Growth, Coping with society’s perceptions and Future plans. The eight emotional states identified are feelings of Loss, Guilt, Uncertainty, Embarrassment, Protectiveness, Denial, Acceptance, Gratitude and Admiration. The results report an overall positive experience between siblings. Challenges related to the lack of public awareness, social stigma and functioning levels of siblings were raised. Siblings reportedly engaged in both, emotion-focused and problem-focused coping strategies. Variables such as family size and sibling’s level of functioning were found to account for some of the differences across the case studies. The discussion provides suggestions on the practical application of findings, limitations and recommendations for future research.