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Co-Design of Social Impact Domains with the Huntington’s Disease Community

Author

Listed:
  • Natasha Layton

    (Rehabilitation, Ageing and Independent Living (RAIL) Research Centre, Monash University, Frankston, VIC 3199, Australia)

  • Natasha Brusco

    (Rehabilitation, Ageing and Independent Living (RAIL) Research Centre, Monash University, Frankston, VIC 3199, Australia
    Alpha Crucis Group, Health Economics, Langwarrin, VIC 3199, Australia)

  • Tammy Gardner

    (Huntington’s Victoria, Hawthorn, VIC 3122, Australia)

  • Libby Callaway

    (Rehabilitation, Ageing and Independent Living (RAIL) Research Centre, Monash University, Frankston, VIC 3199, Australia
    Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia)

Abstract

Background: For people living with or affected by Huntington’s Disease (HD) to experience a good quality of life, tailored support is required to meet physical, cognitive-behavioral, psychological, and social support needs. Substantial service and knowledge gaps regarding HD exist across support providers and service systems. Measuring unmet needs and what quality of life looks like is a fundamental step required to determine the social impact of service investment and provision. The objectives of this study were to validate and map a draft set of HD Social Impact Domains (HD-SID) against existing national and international outcome frameworks; and evaluate and finalize the HD-SID set using a co-design approach with people with lived experience of, and expertise in, HD. Methods: This research used a qualitative co-design process, with 39 participants across four stakeholder groups (people who were HD gene-positive, gene-negative family members, academics, peak organizations, and service providers) to: (i) map and verify the social life areas impacted by HD; (ii) undertake a rigorous three-phased, qualitative process to critically evaluate the draft HD-SID; and (iii) seek feedback on and endorsement of the HD-SID through this co-design process, with a final set of HD-SID identified. Results: Endorsed HD-SID comprised risks and safety (including housing stability, and economic sustainability) and social inclusion (including health and symptom management, physical wellbeing, emotional wellbeing, and building resilient relationships). Conclusions: Effective measurement of the impacts and outcomes for people with HD is informed by both extant measures and an understanding of the specific population needs. This qualitative co-design research demonstrates that HD-SID resonate with the HD community.

Suggested Citation

  • Natasha Layton & Natasha Brusco & Tammy Gardner & Libby Callaway, 2021. "Co-Design of Social Impact Domains with the Huntington’s Disease Community," Disabilities, MDPI, vol. 1(2), pages 1-16, May.
    • Handle: RePEc:gam:jdisab:v:1:y:2021:i:2:p:10-131:d:556263
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    References listed on IDEAS

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    1. Ericka Costa & Caterina Pesci, 2016. "Social impact measurement: why do stakeholders matter?," Sustainability Accounting, Management and Policy Journal, Emerald Group Publishing Limited, vol. 7(1), pages 99-124, March.
    2. Alnoor Ebrahim & V. Kasturi Rangan, 2010. "The Limits of Nonprofit Impact: A Contingency Framework For Measuring Social Performance," Harvard Business School Working Papers 10-099, Harvard Business School.
    3. Ericka Costa & Caterina Pesci, 2016. "Social impact measurement: why do stakeholders matter?," Sustainability Accounting, Management and Policy Journal, Emerald Group Publishing Limited, vol. 7(1), pages 99-124, March.
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