Abstract
Background and objectivesWe engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme).Research design and methodsOver October 2019–March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings.ResultsMost (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group.Discussion and implicationsWe reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.
Highlights
Background and objectivesWe engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)family and home-care workers (NIDUS-professional training programme)
We aimed to explore the experiences of people affected by dementia of participating in co-design of the NIDUS-interventions
Our first annual Community of Interest meeting in April 2018 was attended by 17 family carers of people living with dementia, two home care workers, one Admiral nurse and one home care agency manager
Summary
Background and objectivesWe engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)family and home-care workers (NIDUS-professional training programme). Discussion and implications: We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. Participatory action research is an approach to research that includes the involvement of the community that is being researched in order to understand their world and to ensure that research outcomes are appropriate to identified needs. It describes the principles of participation, cooperation, equality and co-production (Dupuis et al, 2021). The co-design process has been defined as ‘bringing in the experience of users and their communities to the design of services’. Robert et al (2021) suggested a wider definition, describing co-design as a ‘complex social intervention whose impacts and outcomes are difficult to evaluate and cannot be reduced solely to the design solutions it generates’, to encompass the potentially transformative effects of co-design
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