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.

Time to reflect is a rare and valued opportunity; a pilot of the NIDUS‐professional dementia training intervention for homecare workers during the Covid‐19 pandemic

“…The intervention co‐design process (Lord et al., 2021 ) and its theoretical basis, and how this drew on concepts of person‐centred care are described elsewhere (Lord et al., 2020 ).…”

“…The NIDUS‐professional (New Interventions for Independence in Dementia Study) training intervention is, to our knowledge the first training and support intervention for homecare workers to be co‐designed by this staff group, their managers, health professionals, people living with dementia and their family carers (Lord et al., 2021 ) in the UK.…”

Feasibility and acceptability of NIDUS-Professional, a training and support intervention for homecare workers caring for clients living with dementia: a cluster-randomised feasibility trial protocol

“…Full details of NIDUS-Professional content, the process of co-design and results from an initial pilot study are reported elsewhere. 11 12 The intervention is delivered online by two facilitators to groups of six to eight homecare workers. Sessions are held every two weeks for 12 weeks; each last around 1–1.5 hours and cover specific topics ( table 1 ).…”

“… 9 10 Given the importance of joined-up care, we co-designed NIDUS-Professional as an evidence-based support and training programme for homecare agency staff, to be delivered alongside the NIDUS-Family intervention. 11 Our aspiration is that our interventions with homecare staff and with their clients and family carers would be synergistic, through training and supporting staff to work with their clients to reach personalised goals. After a successful pilot of the intervention, 12 we describe here the protocol for our randomised feasibility study to test the feasibility and acceptability of this training and support programme among homecare staff, people living with dementia and their family carers.…”

Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

“…19,29,30,33,[37][38][39] In this context, review papers of studies implementing PPIE highlight the manifold opportunities for PPIE, 15 training for all stakeholders. 29,30,37,[41][42][43][44][45] While the effectiveness of and methods for successful PPIE have accordingly become an increasingly popular research topic, the developed methods are predominantly directed toward adult patients, whereas methods for integrating children into the research process are still lacking. 46 Furthermore, the awareness for and attitude toward PPIE among the various stakeholders in health care has only been investigated by few authors 12 and an even lower number of studies has focused on the complex interdisciplinary field on pediatric oncology.…”