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Building a Research Roadmap for Caregiver Innovation: Findings from a Multi-Stakeholder Consultation and Evaluation

Author

Listed:
  • Kieren J. Egan

    (Digital Health and Wellness Research Group, Department of Computer and Information Science, Faculty of Science, University of Strathclyde, Glasgow G1 1XH, UK)

  • Kathryn A. McMillan

    (Digital Health and Wellness Research Group, Department of Computer and Information Science, Faculty of Science, University of Strathclyde, Glasgow G1 1XH, UK
    Information and Digital Technology Department, NHS Shetland, Lerwick, Shetland ZE1 0LB, UK)

  • Marilyn Lennon

    (Digital Health and Wellness Research Group, Department of Computer and Information Science, Faculty of Science, University of Strathclyde, Glasgow G1 1XH, UK)

  • Lisa McCann

    (Digital Health and Wellness Research Group, Department of Computer and Information Science, Faculty of Science, University of Strathclyde, Glasgow G1 1XH, UK)

  • Roma Maguire

    (Digital Health and Wellness Research Group, Department of Computer and Information Science, Faculty of Science, University of Strathclyde, Glasgow G1 1XH, UK)

Abstract

Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions.

Suggested Citation

  • Kieren J. Egan & Kathryn A. McMillan & Marilyn Lennon & Lisa McCann & Roma Maguire, 2021. "Building a Research Roadmap for Caregiver Innovation: Findings from a Multi-Stakeholder Consultation and Evaluation," IJERPH, MDPI, vol. 18(23), pages 1-18, November.
    • Handle: RePEc:gam:jijerp:v:18:y:2021:i:23:p:12291-:d:686251
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    References listed on IDEAS

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    1. Stansfeld, Stephen & Smuk, Melanie & Onwumere, Juliana & Clark, Charlotte & Pike, Cleo & McManus, Sally & Harris, Jenny & Bebbington, Paul, 2014. "Stressors and common mental disorder in informal carers – An analysis of the English Adult Psychiatric Morbidity Survey 2007," Social Science & Medicine, Elsevier, vol. 120(C), pages 190-198.
    2. Rafael del-Pino-Casado & Emilia Priego-Cubero & Catalina López-Martínez & Vasiliki Orgeta, 2021. "Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis," PLOS ONE, Public Library of Science, vol. 16(3), pages 1-20, March.
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