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      Developing a model of participation post-stroke: a mixed-methods approach

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          Abstract

          Purpose

          To develop and verify a model of participation post stroke, as a domain of health related quality of life.

          Methods

          An explanatory sequential mixed-methods design was selected. The quantitative phase developed a participation model with data from an observational study of 453 participants at 12 months post-stroke, using structural equation modeling. The qualitative phase followed to verify the model from the perspective of individuals post-stroke. Data was collected from two groups of eight stroke survivors involved in a multicentre trial about participation in the community. Individuals took photographs to describe participation; discussion of photographs was conducted over the course of three focus groups, and analysis identified emergent categories related to the model.

          Results

          The 12-month post stroke participation model consisted of latent variables: accomplishment, restricted roles, and health efficacy. The model fit was reasonable: normed χ 2 = 2.95, RMSEA = 0.066(0.052; 0.079). The qualitative data verified the model; participants initiated photo-taking and discussion of all aspects of the model. Concepts of social support, environment, and cognitive difficulties were also discussed in relation to participation.

          Conclusions

          The participation model was developed and verified. Additions to future models are suggested. Theoretical, clinical, and research implications are discussed.

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          Developing and implementing a triangulation protocol for qualitative health research.

          Tracy Farmer, Kerry Robinson, Susan J. Elliott … (2006)
          In this article, the authors present an empirical example of triangulation in qualitative health research. The Canadian Heart Health Dissemination Project (CHHDP) involves a national examination of capacity building and dissemination undertaken within a series of provincial dissemination projects. The Project's focus is on the context, processes, and impacts of health promotion capacity building and dissemination. The authors collected qualitative data within a parallel-case study design using key informant interviews as well as document analysis. Given the range of qualitative data sets used, it is essential to triangulate the data to address completeness, convergence, and dissonance of key themes. Although one finds no shortage of admonitions in the literature that it must be done, there is little guidance with respect to operationalizing a triangulation process. Consequently, the authors are feeling their way through the process, using this opportunity to develop, implement, and reflect on a triangulation protocol.
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            Activity, participation, and quality of life 6 months poststroke.

            Robert Côté, Sharon Wood-Dauphinee, N Mayo … (2002)
            To estimate the extent of activity and participation of individuals 6 months poststroke and their influence on health-related quality of life (QOL) and overall QOL, information that would be useful in identifying services that stroke patients would need in the community. Inception cohort study. Ten acute care hospitals in metropolitan areas of the province of Quebec. Persons with first-ever stroke, either ischemic or hemorrhagic. In parallel, a population-based sample of community-dwelling individuals without stroke, frequency matched in age and city district, were also recruited. Not applicable. Stroke subjects were interviewed by telephone at 6-month intervals for 2 years of follow-up. The community-dwelling individuals without stroke were also followed. A total of 434 persons were interviewed approximately 6 months poststroke. Their average age +/- standard deviation was 68.4+/-12.5 years; the average age of the 486 controls was 61.7+/-12.4 years. The stroke group scored on average 90.6/100 on the Barthel Index; 39% reported a limitation in functional activities, 54% reported limitations with higher-level activities of daily living such as housework and shopping, and 65% reported restrictions in reintegration into community activities. By using the Medical Outcomes 36-Item Short-Form Health Survey (SF-36), persons with stroke rated their physical health 7 points lower than healthy peers; also, 7 of the 8 subscales of the SF-36 were affected by stroke. Almost 50% of the community-dwelling stroke population lived with sequelae of stroke such that, unless there was a full-time and able-bodied caregiver at home, they needed some form of home help. A large proportion also reported lack of meaningful activity, indicating a need for organized support groups for people with stroke; otherwise, boredom will lead to depression and worsening of function, affect, health status, and QOL. Copyright 2002 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation
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              What does participation mean? An insider perspective from people with disabilities.

              Allen Heinemann, Jennifer Bogner, Gale G Whiteneck … (2007)
              Although participation is an important construct and valued goal, how it is conceptualized, defined and measured varies widely. This qualitative, multi-site study sought to gain an insider perspective from people with disabilities in grounding what participation means, how to characterize it, and the barriers and supports to participation. Sixty-three people self-identifying with diverse disabilities participated in qualitative focus groups across sites. Participants conceptualized participation as a cluster of values that included active and meaningful engagement/being a part of, choice and control, access and opportunity/enfranchisement, personal and societal responsibilities, having an impact and supporting others, and social connection, inclusion and membership. No gold standard for ideal or optimal participation emerged; no one defined set or frequency of activities accounted for 'full' participation. Participants described needing to be free to define and pursue participation on their own terms rather than meeting predetermined societal norms. Participation was viewed as both a right and a responsibility, influenced by and ascribed to the person and to the society. Participation does not occur in a vacuum; the environment dynamically influences participation. Implications of this conceptual framing for assessment, research and systems level change to support participation of people with disabilities are discussed.
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                Author and article information

                Contributors
                : +204-977-5637 , +204-789-3927 , barclayg@cc.umanitoba.ca
                Journal
                Journal ID (nlm-ta): Qual Life Res
                Title: Quality of Life Research
                Publisher: Springer Netherlands (Dordrecht )
                ISSN (Print): 0962-9343
                ISSN (Electronic): 1573-2649
                Publication date (Electronic): 12 July 2011
                Publication date PMC-release: 12 July 2011
                Publication date (Print): April 2012
                Volume: 21
                Issue: 3
                Pages: 417-426
                Affiliations
                [1 ]Department of Physical Therapy, School of Medical Rehabilitation, University of Manitoba, R106-771 McDermot Ave, Winnipeg, MB R3E 0T6 Canada
                [2 ]Department of Occupational Therapy, School of Medical Rehabilitation, University of Manitoba, R106-771 McDermot Ave, Winnipeg, MB R3E 0T6 Canada
                [3 ]James McGill Professor, Department of Medicine, Division of Clinical Epidemiology, School of Physical and Occupational Therapy, McGill University, Montreal, Canada
                [4 ]Division of Geriatrics, Health Center Royal Victoria Hospital, McGill University, Site Ross Pavilion R4.29, 687 Pine Ave W, Montreal, QC H3A 1A1 Canada
                Article
                Publisher ID: 9968
                DOI: 10.1007/s11136-011-9968-6
                PMC ID: 3296017
                PubMed ID: 21748524
                SO-VID: 5d6f7c5b-16ec-4ce9-8441-c49f401ff8d5
                Copyright © © The Author(s) 2011
                History
                Date accepted : 21 June 2011
                Categories
                Subject: Article
                Custom metadata
                issue-copyright-statement © Springer Science+Business Media B.V. 2012

                ScienceOpen disciplines: Public health
                Keywords: structural equation modeling,mixed-methods,stroke,participation,health related quality of life,photovoice
                Data availability:
                ScienceOpen disciplines: Public health
                Keywords: structural equation modeling, mixed-methods, stroke, participation, health related quality of life, photovoice

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