Use of participatory action research approach to develop a self-management resource for persons living with dementia

There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

Abstract

This article describes the use of a participatory action research (PAR) approach to developing a self-management resource for persons living with dementia and care partners. Despite growing evidence that persons with dementia are able to contribute in meaningful ways to decision-making about their care and life preferences, few opportunities exist for them to participate in the design of resources and services meant for them. There is also a need to support the self-management of persons living with dementia with the provision of accurate, high quality, user-friendly information. The Living Well with Dementia resource was developed through a partnership with persons with dementia, family members, Alzheimer Society representatives, primary care providers, and researchers. The methods used in the development of this resource are outlined in six steps employed in this process, from establishment of a PAR team to final resource creation. Informed by a whole systems approach, the resource brings together essential components of self-management into a comprehensive system of care and support for living. It empowers users to be active participants in the application of new knowledge to their lives. Better self-management has important implications for access to health care and quality of life for persons with dementia and care partners.

Related collections

Most cited references 91

Record: found
Abstract: found
Article: not found

DISCERN: an instrument for judging the quality of written consumer health information on treatment choices.

D Charnock, S Shepperd, G Needham … (1999)

To develop a short instrument, called DISCERN, which will enable patients and information providers to judge the quality of written information about treatment choices. DISCERN will also facilitate the production of new, high quality, evidence-based consumer health information. An expert panel, representing a range of expertise in consumer health information, generated criteria from a random sample of information for three medical conditions with varying degrees of evidence: myocardial infarction, endometriosis, and chronic fatigue syndrome. A graft instrument, based on this analysis, was tested by the panel on a random sample of new material for the same three conditions. The panel re-drafted the instrument to take account of the results of the test. The DISCERN instrument was finally tested by a national sample of 15 information providers and 13 self help group members on a random sample of leaflets from 19 major national self help organisations. Participants also completed an 8 item questionnaire concerning the face and content validity of the instrument. Chance corrected agreement (weighted kappa) for the overall quality rating was kappa = 0.53 (95% CI kappa = 0.48 to kappa = 0.59) among the expert panel, kappa = 0.40 (95% CI kappa = 0.36 to kappa = 0.43) among information providers, and kappa = 0.23 (95% CI kappa = 0.19 to kappa = 0.27) among self help group members. Higher agreement levels were associated with experience of using the instrument and with professional knowledge of consumer health information. Levels of agreement varied across individual items on the instrument, reflecting the need for subjectivity in rating certain criteria. The trends in levels of agreement were similar among all groups. The final instrument consisted of 15 questions plus an overall quality rating. Responses to the questionnaire after the final testing revealed the instrument to have good face and content validity and to be generally applicable. DISCERN is a reliable and valid instrument for judging the quality of written consumer health information. While some subjectivity is required for rating certain criteria, the findings demonstrate that the instrument can be applied by experienced users and providers of health information to discriminate between publications of high and low quality. The instrument will also be of benefit to patients, though its use will be improved by training.

0 comments Cited 394 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: found

Is Open Access

Engaging patients to improve quality of care: a systematic review

Yvonne Bombard, G Ross Baker, Elaina Orlando … (2018)

Background To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services. Methods We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients’ experiences of being engaged. Results Forty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign—discrete products largely derived from low-level engagement (consultative unidirectional feedback)—whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients’ experiences of the engagement process (n = 12; 25%). While most experiences were positive—increased self-esteem, feeling empowered, or independent—some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made. Conclusions Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients’ experiences of the engagement process and whether these outcomes translate into improved quality of care. Registration N/A (data extraction completed prior to registration on PROSPERO). Electronic supplementary material The online version of this article (10.1186/s13012-018-0784-z) contains supplementary material, which is available to authorized users.

0 comments Cited 287 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: found

Is Open Access

Helping patients help themselves: A systematic review of self-management support strategies in primary health care practice

Sarah Dineen-Griffin, Victoria García-Cárdenas, Kylie Williams … (2019)

Background Primary health professionals are well positioned to support the delivery of patient self-management in an evidence-based, structured capacity. A need exists to better understand the active components required for effective self-management support, how these might be delivered within primary care, and the training and system changes that would subsequently be needed. Objectives (1) To examine self-management support interventions in primary care on health outcomes for a wide range of diseases compared to usual standard of care; and (2) To identify the effective strategies that facilitate positive clinical and humanistic outcomes in this setting. Method A systematic review of randomized controlled trials evaluating self-management support interventions was conducted following the Cochrane handbook & PRISMA guidelines. Published literature was systematically searched from inception to June 2019 in PubMed, Scopus and Web of Science. Eligible studies assessed the effectiveness of individualized interventions with follow-up, delivered face-to-face to adult patients with any condition in primary care, compared with usual standard of care. Matrices were developed that mapped the evidence and components for each intervention. The methodological quality of included studies were appraised. Results 6,510 records were retrieved. 58 studies were included in the final qualitative synthesis. Findings reveal a structured patient-provider exchange is required in primary care (including a one-on-one patient-provider consultation, ongoing follow up and provision of self-help materials). Interventions should be tailored to patient needs and may include combinations of strategies to improve a patient’s disease or treatment knowledge; independent monitoring of symptoms, encouraging self-treatment through a personalized action plan in response worsening symptoms or exacerbations, psychological coping and stress management strategies, and enhancing responsibility in medication adherence and lifestyle choices. Follow-up may include tailored feedback, monitoring of progress with respect to patient set healthcare goals, or honing problem-solving and decision-making skills. Theoretical models provided a strong base for effective SMS interventions. Positive outcomes for effective SMS included improvements in clinical indicators, health-related quality of life, self-efficacy (confidence to self-manage), disease knowledge or control. An SMS model has been developed which sets the foundation for the design and evaluation of practical strategies for the construct of self-management support interventions in primary healthcare practice. Conclusions These findings provide primary care professionals with evidence-based strategies and structure to deliver SMS in practice. For this collaborative partnership approach to be more widely applied, future research should build on these findings for optimal SMS service design and upskilling healthcare providers to effectively support patients in this collaborative process.

0 comments Cited 127 times – based on 0 reviews      Review now

Bookmark

All references

Author and article information

Journal

Journal ID (nlm-ta): Dementia (London)

Journal ID (iso-abbrev): Dementia (London)

Journal ID (hwp): spdem

Journal ID (publisher-id): DEM

Title: Dementia (London, England)

Publisher: SAGE Publications (Sage UK: London, England )

ISSN (Print): 1471-3012

ISSN (Electronic): 1741-2684

Publication date (Electronic): 25 February 2021

Publication date (Print): October 2021

Volume: 20

Issue: 7

Pages: 2393-2411

Affiliations

[1-1471301221997281]Department of Recreation and Leisure Studies and Partnerships in Dementia Care Alliance, Ringgold 8430, universityUniversity of Waterloo; , Ontario, Canada

[2-1471301221997281]School of Public Health and Health Systems and Partnerships in Dementia Care Alliance, Ringgold 8430, universityUniversity of Waterloo; , Ontario, Canada

[3-1471301221997281]Murray Alzheimer Research and Education Program, Ringgold 8430, universityUniversity of Waterloo; , Ontario, Canada

[4-1471301221997281]Partner living with dementia of the Murray Alzheimer Research and Education Program, Ringgold 8430, universityUniversity of Waterloo; , Ontario, Canada

[5-1471301221997281]Partner living with dementia of the Murray Alzheimer Research and Education Program, Ringgold 8430, universityUniversity of Waterloo; , Ontario, Canada

[6-1471301221997281]Department of Health Sciences and the Centre for Education and Research on Aging & Health, universityLakehead University; , Ontario, Canada

Author notes

[*]Sherry Dupuis, Department of Recreation and Leisure Studies and Partnerships in Dementia Care Alliance, University of Waterloo, 200 University Avenue West, Waterloo, Ontario, Canada

Author information

Sherry Dupuis https://orcid.org/0000-0002-0819-807X

Article

Publisher ID: 10.1177_1471301221997281

DOI: 10.1177/1471301221997281

PMC ID: 8564262

PubMed ID: 33631971

SO-VID: 94d9451e-dcf0-4889-85cf-cdf72027d0c8

License:

This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

History

Funding

Funded by: Canadian Dementia Knowledge Translation Network;

Award ID: CDKTN Education and Training Knowledge Translation

Funded by: Canadian Institutes of Health Research, FundRef https://doi.org/10.13039/501100000024;

Award ID: 233631

Custom metadata

typesetter ts10

Keywords: participatory action research,self-management,knowledge translation,dementia

Data availability:

Keywords: participatory action research, self-management, knowledge translation, dementia

Use of participatory action research approach to develop a self-management resource for persons living with dementia

Read this article at

Abstract

Related collections

Resource Identification

Most cited references 91

DISCERN: an instrument for judging the quality of written consumer health information on treatment choices.

Engaging patients to improve quality of care: a systematic review

Helping patients help themselves: A systematic review of self-management support strategies in primary health care practice

Author and article information

Journal

Affiliations

Author notes

Author information

Article

History

Funding

Categories

Custom metadata

Comments

Comment on this article

Similar content 30

Cited by 2

Most referenced authors 632