eprintid: 10141403
rev_number: 12
eprint_status: archive
userid: 608
dir: disk0/10/14/14/03
datestamp: 2022-01-07 15:55:52
lastmod: 2022-01-07 15:55:52
status_changed: 2022-01-07 15:55:52
type: article
metadata_visibility: show
creators_name: Lord, K
creators_name: Kelleher, D
creators_name: Ogden, M
creators_name: Mason, C
creators_name: Rapaport, P
creators_name: Burton, A
creators_name: Leverton, M
creators_name: Downs, M
creators_name: Souris, H
creators_name: Jackson, J
creators_name: Lang, I
creators_name: Manthorpe, J
creators_name: Cooper, C
title: Co-designing complex interventions with people living with dementia and their supporters
ispublished: inpress
divisions: UCL
divisions: B02
divisions: C07
divisions: D79
divisions: D12
divisions: J96
keywords: Co-design, dementia, interventions, public and patient involvement
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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.
date: 2021-12-30
date_type: published
official_url: https://doi.org/10.1177%2F14713012211042466
oa_status: green
full_text_type: pub
language: eng
primo: open
primo_central: open_green
verified: verified_manual
elements_id: 1912890
doi: 10.1177/14713012211042466
lyricists_name: Burton, Alexandra
lyricists_name: Cooper, Claudia
lyricists_name: Rapaport, Penny
lyricists_id: ABURT01
lyricists_id: CCOOP74
lyricists_id: PRAPA28
actors_name: Flynn, Bernadette
actors_id: BFFLY94
actors_role: owner
full_text_status: public
publication: Dementia
event_location: England
citation:        Lord, K;    Kelleher, D;    Ogden, M;    Mason, C;    Rapaport, P;    Burton, A;    Leverton, M;                         ... Cooper, C; + view all <#>        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;   - view fewer <#>    (2021)    Co-designing complex interventions with people living with dementia and their supporters.                   Dementia        10.1177/14713012211042466 <https://doi.org/10.1177/14713012211042466>.    (In press).    Green open access   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/10141403/1/14713012211042466.pdf