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Capturing the stories behind the numbers: The Auckland Regional Community Stroke Study (ARCOS IV), a qualitative study

Authors

  • Sandy J. Rutherford,

    1. Person Centered Rehabilitation Centre, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New , Zealand
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  • Alice Theadom,

    1. National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
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  • Amy Jones,

    1. National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
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  • Clare Hocking,

    1. School of Rehabilitation and Occupation Studies, Auckland University of Technology, Auckland, New Zealand
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  • Valery Feigin,

    1. National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
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  • Rita Krishnamurthi,

    1. National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
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  • Bruce Kent,

    1. Person Centered Rehabilitation Centre, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New , Zealand
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  • Suzanne Barker-Collo,

    1. Department of Psychology, University of Auckland, Auckland, New Zealand
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  • Kathryn M. McPherson

    Corresponding author
    1. Person Centered Rehabilitation Centre, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New , Zealand
    • Correspondence: Kathryn McPherson*, Person Centred Research Centre, School of Rehabilitation and Occupation Studies, School of Public Health and Psychosocial Studies, Faculty of Health and Environmental Sciences, AUT University, AUT North Shore Campus, 90 Akoranga Dr, Northcote 0627, Private Bag 92006, Auckland 1142, New Zealand.

      E-mail: katmcphe@aut.ac.nz

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  • Conflicts of interest: None declared.

Abstract

Background

Qualitative data can add value and understanding to more traditional epidemiological studies. This study was designed to complement the quantitative data from the incidence study the Auckland Regional Community Stroke Study or ARCOS-IV by using qualitative methods to uncover the richer detail of life as a stroke survivor, thereby extending our understanding of the impact of stroke.

Aims

The aims of the study were to identify how the experience of recovery and adaptation changes over time after stroke; and to elicit the strategies people with stroke and their whānau/family use and find helpful in living life after stroke. The aim of this paper is to describe the methodology and also the challenges and advantages of embedding qualitative research into a large epidemiological study.

Methods

Longitudinal study utilizing a Qualitative Description design in a subset of those taking part in the incidence study. Participants will be interviewed at 6, 12, 24, and 36 months after stroke. Semistructured interviews will explore three key areas: (1) issues of importance to people following a stroke and their whānau/family; (2) the perceived impact on people's sense of recovery, adaptation, and hopes; and (3) key strategies that people with stroke and their whānau/family use and find most helpful in living life after stroke. Thematic analysis will be conducted using iterative constant comparative methods.

Conclusions

This methodology paper demonstrates the application of mixed methods in epidemiology. It also considers some of the practical and methodological issues that have emerged and may provide a useful framework for other qualitative projects in population-based studies.

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