Exploring ways to enhance pain management for older people with dementia in acute care settings using a Participatory Action Research approach

Abstract

Background: Dementia is a progressive condition that leads to reduced cognition, deteriorating communication and is a risk factor for other acute and chronic health problems. The rise in the prevalence of dementia means untreated pain is becoming increasingly common with healthcare staff being challenged to provide optimal pain management. This negatively impacts the person living with dementia and their carers. There is minimal evidence that explores the pain management experience of patients as they move through acute care settings.Objective: To understand the complexities of managing the pain of older people with dementia as they progress through acute care settings, with the view of assisting staff to improve practice. Method: A Participatory Action Research approach, guided by the Promoting ActionResearch in Health Services framework, was used. Three Action Cycles were completed comprising of an exploratory audit and two case studies (Action Cycle One), three focus groups with a total of 14 participants (Action Cycle Two) and the development and implementation of immediate and long-term actions (Action Cycle Three).Results: Thematic analysis identified four themes that affected pain management practices. These were not knowing the patient; balancing competing priorities; knowledge and understanding of pain and dementia and not assimilating available information. Conclusion:Pain management practices for patient living with dementia, across acute care settings, was influenced by shared ways of thinking and working. Not knowing the patient, fragmentation of information and having insufficient knowledge of the subtleties of dementia led participants to deliver task-focused, target and policydriven care that was not person-centred in its approach. Facilitated reflection enabled acute care teams to actively participate in identifying problems and finding solutions to enhance practice.

Participatory Research Approaches in Alzheimer’s Disease and Related Dementias Literature: A Scoping Review

“…Of these 47 articles, 81% provided a description or definition of the term. Notably, while the term used in the title or abstract of these papers was PAR , many of the definitions drew from action research or explicitly used the terminology and described the action research cycle ( Andrews et al, 2019 ; Chenoweth & Kilstoff, 1998 ; Harkin et al, 2022 ). The main difference that emerged between studies using action research versus PAR was that the latter focused more on community partnerships beyond practitioners, and more readily identified the involvement of people from marginalized backgrounds ( Dupuis et al, 2021 ; Goeman et al, 2016 ).…”