Co-designing complex interventions with people living with dementia and their supporters

Kathryn Lord; Daniel Kelleher; Margaret Ogden; Clare Mason; Penny Rapaport; Alexandra Burton; Monica Leverton; Murna Downs; Helen Souris; Joy Jackson; Iain Lang; Jill Manthorpe; Claudia Cooper

doi:10.1177/14713012211042466

Co-designing complex interventions with people living with dementia and their supporters

Kathryn Lord, Daniel Kelleher, Margaret Ogden, Clare Mason, Penny Rapaport, Alexandra Burton, Monica Leverton, Murna Downs, Helen Souris, Joy Jackson, Iain Lang, Jill Manthorpe, Claudia Cooper

Research output: Contribution to journal › Article › peer-review

13 Citations (Scopus)

Abstract

Background and objectives: We 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 methods: Over 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. Results: Most (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 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. We encourage future studies to incorporate evaluations of co-design processes into study design.

Original language	English
Pages (from-to)	426-441
Number of pages	16
Journal	Dementia: The International Journal of Social Research and Practice
Volume	21
Issue number	2
DOIs	https://doi.org/10.1177/14713012211042466 https://doi.org/10.1177/14713012211042466
Publication status	Published - 4 Feb 2022

Keywords

co-design
dementia
interventions
public and patient involvement

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Lord, K., Kelleher, D., Ogden, M., Mason, C., Rapaport, P., Burton, A., Leverton, M., Downs, M., Souris, H., Jackson, J., Lang, I., Manthorpe, J., & Cooper, C. (2022). Co-designing complex interventions with people living with dementia and their supporters. Dementia: The International Journal of Social Research and Practice, 21(2), 426-441. https://doi.org/10.1177/14713012211042466, https://doi.org/10.1177/14713012211042466

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title = "Co-designing complex interventions with people living with dementia and their supporters",

abstract = "Background and objectives: We 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 methods: Over 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. Results: Most (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 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. We encourage future studies to incorporate evaluations of co-design processes into study design.",

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author = "Kathryn Lord and Daniel Kelleher and Margaret Ogden and Clare Mason and Penny Rapaport and Alexandra Burton and Monica Leverton and Murna Downs and Helen Souris and Joy Jackson and Iain Lang and Jill Manthorpe and Claudia Cooper",

note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is part of the NIDUS (New Interventions in Dementia Study), which is hosted within the Alzheimer{\textquoteright}s Society Centre of Excellence for Independence at home (Centre of Excellence grant 330). Publisher Copyright: {\textcopyright} The Author(s) 2021.",

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Lord, K, Kelleher, D, Ogden, M, Mason, C, Rapaport, P, Burton, A, Leverton, M, Downs, M, Souris, H, Jackson, J, Lang, I, Manthorpe, J & Cooper, C 2022, 'Co-designing complex interventions with people living with dementia and their supporters', Dementia: The International Journal of Social Research and Practice, vol. 21, no. 2, pp. 426-441. https://doi.org/10.1177/14713012211042466, https://doi.org/10.1177/14713012211042466

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T1 - Co-designing complex interventions with people living with dementia and their supporters

AU - Lord, Kathryn

AU - Kelleher, Daniel

AU - Ogden, Margaret

AU - Mason, Clare

AU - Rapaport, Penny

AU - Burton, Alexandra

AU - Leverton, Monica

AU - Downs, Murna

AU - Souris, Helen

AU - Jackson, Joy

AU - Lang, Iain

AU - Manthorpe, Jill

AU - Cooper, Claudia

N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is part of the NIDUS (New Interventions in Dementia Study), which is hosted within the Alzheimer’s Society Centre of Excellence for Independence at home (Centre of Excellence grant 330). Publisher Copyright: © The Author(s) 2021.

PY - 2022/2/4

Y1 - 2022/2/4

N2 - Background and objectives: We 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 methods: Over 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. Results: Most (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 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. We encourage future studies to incorporate evaluations of co-design processes into study design.

AB - Background and objectives: We 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 methods: Over 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. Results: Most (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 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. We encourage future studies to incorporate evaluations of co-design processes into study design.

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Co-designing complex interventions with people living with dementia and their supporters

Abstract

Keywords

UN SDGs

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