Skip to main content
Intended for healthcare professionals
Restricted access
Review article
First published online October 31, 2013

Capturing the Stories behind the Numbers: The Auckland Regional Community Stroke Study (ARCOS IV), a Qualitative Study

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.

Get full access to this article

View all access and purchase options for this article.

References

1. Demain S, Wiles R, Roberts L, McPherson K. Recovery plateau following stroke: fact or fiction? Disabil Rehabil 2006; 28:815–21.
2. Kayes NM, McPherson KM. Measuring what matters: does ‘objectivity’ mean good science? Disabil Rehabil 2010; 32:1011–9.
3. McPherson K. What are the boundaries of health and functioning — and who should say what they are. Disabil Rehabil 2006; 28:1473–4.
4. McPherson KM, Brander P, Taylor WJ, McNaughton HK. Consequences of stroke, arthritis and chronic pain-are there important similarities? Disabil Rehabil 2004; 26:988–99.
5. de Haan R, Aaronson N, Limburg M, Hewer R, van Crevel H. Measuring quality of life in stroke. Stroke 1993; 24:320–7.
6. de Haan RM, Horn JM, Limburg MMDP, Van Der Meulen JMDP, Bossuyt PP. A comparison of five stroke scales with measures of disability, handicap, and quality of life. Stroke 1993; 24:1178–81.
7. Horgan NF, O'Regan M, Cunningham CJ, Finn AM. Recovery after stroke: a 1-year profile. Disabil Rehabil 2009; 31:831–9.
8. Kirkevold M. The unfolding illness trajectory of stroke. Disabil Rehabil 2002; 24:887–98.
9. Ironside PM, Scheckel M, Wessels C, Bailey ME, Powers S, Seeley DK. Experiencing chronic illness: cocreating new understandings. Qual Health Res 2003; 13:171–83.
10. Eilertsen G, Kirkevold M, Bjørk IT. Recovering from a stroke: a longitudinal, qualitative study of older Norwegian women. J Clin Nurs 2010; 19:2004–13.
11. Ellis-Hill C, Payne S, Ward C. Using stroke to explore the Life Thread Model: an alternative approach to understanding rehabilitation following an acquired disability. Disabil Rehabil 2008; 30:150–9.
12. Burton CR. Living with stroke: a phenomenological study. J Adv Nurs 2000; 32:301–9.
13. Wilson PM, Kendall S, Brooks F. The Expert Patients Programme: a paradox of patient empowerment and medical dominance. Health Soc Care 2007; 15:426–38.
14. Hart E. System induced setbacks in stroke recovery. Sociol Health Illn 2001; 23:101–23.
15. Pound P, Gompertz P, Ebrahim S. Social and practical strategies described by people living at home with stroke. Health Soc Care 1999; 7:120–8.
16. Reed M, Harrington R, Duggan Á, Wood VA. Meeting stroke survivors' perceived needs: a qualitative study of a community-based exercise and education scheme. Clin Rehabil 2010; 24:16–26.
17. Carlsson GE, Moller A, Blomstrand C. Managing an everyday life of uncertainty – A qualitative study of coping in persons with mild stroke. Disabil Rehabil 2009; 31:773–82.
18. Faircloth CA, Boylstein C, Rittman M, Young ME, Gubrium J. Sudden illness and biographical flow in narratives of stroke recovery. Sociol Health Illn 2004; 26:242–61.
19. Dyall L, Feigin V, Brown P. Stroke: a picture of health disparities in New Zealand. Soc Policy N Z 2008; 33:178–91.
20. Siegert RJ, Ward T, Levack WMM, McPherson KM. A Good Lives Model of clinical and community rehabilitation. Disabil Rehabil 2007; 29:1604–15.
21. Evans JJ. Positive psychology and Brain Injury rehabilitation. Brain Impair 2011; 12:117–27.
22. Worrall L, Brown K, Cruice M, et al. The evidence for a life-coaching approach to aphasia. Aphasiology 2010; 24:497–514.
23. Grohn B, Worrall LE, Simmons-Mackie N, Brown K. The first 3-months post-stroke: what facilitates successfully living with aphasia? Int J Speech-Lang Pathology 2012; 14:390–400.
24. Krishnamurthi R, Jones A, Barber A, Barker-Collo S, McPherson KM, Bennett D. Methodology of a population-based Stroke and TIA incidence and outcomes study: the Auckland regional community Stroke study (ARCOS IV) 2011–2012. Int J Stroke 2013;
25. Sandelowski M. Whatever happened to qualitative description? Res Nurs ealth 2000; 23:334–40.
26. Charmaz K. Premises, principles, and practices in qualitative research: revisiting the foundations. Qual Health Res 2004; 14:976–93.
27. Charmaz K. ‘Discovering’ chronic illness: using grounded theory. Soc Sci Med 1990; 30:1161–72.
28. Krishnamurthi R, Witt E, Barker-Collo S, McPherson KM, Davis-Martin K, Bennett D. Reducing recurrent Stroke: methodology of the motivational interviewing in Stroke (MIST) randomised clinical trial. Int J Stroke 2013;
29. Morse JM. Determining sample size. Qual Health Res 2000; 10:3–5.
30. Sullivan-Bolyai S, Bova C, Harper D. Developing and refining interventions in persons with health disparities: the use of qualitative description. Nurs Outlook 2005; 53:127–33.
31. Robison J, Wiles R, Ellis-Hill C, McPherson K, Hyndman D, Ashburn A. Resuming previously valued activities post-stroke: who or what helps? Disabil Rehabil 2009; 31:1555–66.
32. Ellis-Hill C, Robison J, Wiles R, McPherson K, Hyndman D, Ashburn A. Going home to get on with life: patients and carers experiences of being discharged from hospital following a stroke. Disabil Rehabil 2009; 31:61–72.
33. Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illn 1983; 5:168–95.
34. Charmaz K. Stories of suffering: subjective tales and research narratives. Qual Health Res 1999; 9:362–82.
35. Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Silverman D, editor. London, Sage Publications, 2006.
36. Mays N, Pope C. Assessing quality in qualitative research. BMJ 2000; 320:50–2.
37. Neergaard MA, Olesen F, Andersen RS, Sondergaard J. Qualitative description – the poor cousin of health research? BMC Med Res Methodol 2009; 9:52–7.
38. Banner DJ, Albarran JW. Computer-assisted qualitative data analysis software: a review. Can J Cardiovasc Nurs 2009; 19:24–7.
39. Bergin M. NVivo 8 and consistency in data analysis: reflecting on the use of a qualitative data analysis program. Nurse Res 2011; 18:6–12.
40. Dierckx de Casterlé B, Gastmans C, Bryon E, Denier Y. QUAGOL: a guide for qualitative data analysis. Int J Nurs Stud 2012; 49:360–71.
41. Juritzen TI, Grimen H, Heggen K. Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees. Nurs Ethics 2011; 18:640–50.
42. Dresser R. Research oversight and adults with cognitive impairment. Hastings Cen Rep 2003; 33:9–10.
43. Steinhauser KE, Clipp EC, Hays JC, et al. Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliat Med 2006; 20:745–54.
44. Ewing G, Rogers M, Barclay S, McCabe J, Martin A, Todd C. Recruiting patients into a primary care based study of palliative care: why is it so difficult? Palliat Med 2004; 18:452–9.
45. Nordentoft HM, Kappel N. Vulnerable participants in health research: methodological and ethical challenges. J Soc Work Pract 2011; 25:365–76.
46. Legerski JP, Bunnell SL. The risks, benefits, and ethics of trauma-focused research participation. Ethics Behav 2010; 20:429–42.
47. Ahern K. Informed consent: are researchers accurately representing risks and benefits? Scand J Caring Sci 2012; 26:671–8.
48. Campbell R, Adams AE, Wasco SM, Ahrens CE, Sefl T. ‘What has it been like for you to talk with me today?’: the impact of participating in interview research on rape survivors. Violence Against Women 2010; 16:60–83.
49. Jorm AF, Kelly CM, Morgan AJ. Participant distress in psychiatric research: a systematic review. Psychol Med 2007; 37:917–26.
50. Wassink HL, Chapman GE, Levy-Milne R, Forster-Coull L. Implementing the British Columbia nutrition survey: perspectives of interviewers and facilitators. Can J Diet Pract Res 2004; 65:59–64.
51. Derrett S, Colhoun S. Being a quantitative interviewer: qualitatively exploring interviewers' experiences in a longitudinal cohort study. BMC Med Res Methodol 2011; 11:165.
52. Dickson-Swift V, James EL, Kippen S, Liamputtong P. Doing sensitive research: what challenges do qualitative researchers face? Qual Res 2007; 7:327–53.
53. Richman KA, Alexander LB, True G. Proximity, ethical dilemmas, and community research workers. AJOB Prim Res 2012; 3:19–29.
54. Logie C, Llana J, Wangari T, Loutfy MR. Opportunities, ethical challenges, and lessons learned from working with peer research assistants in a multi-method HIV community-based research study in Ontario, Canada. J Empir Res Hum Res Ethics 2012; 7:10–9.
55. Wray N, Markovic M, Manderson L. ‘Researcher saturation’: the impact of data triangulation and intensive-research practices on the researcher and qualitative research process. Qual Health Res 2007; 17:1392–402.
56. Richards HM, Schwartz LJ. Ethics of qualitative research: are there special issues for health services research? Fam Pract 2002; 19:135–9.
57. Sim J. Addressing conflicts in research ethics: consent and risk of harm. Physiother Res Int 2010; 15:80–7.
58. Clarke A. Qualitative interviewing: encountering ethical issues and challenges. Nurse Res 2006; 13:19–29.
59. Emanuel EJ, Wendler D, Grady C. What makes clinical research ethical? JAMA 2000; 283:2701–11.
60. Thorne S. Interpretive Description. Morse J, editor. Walnut Creek, CA, Left Coast Press, Inc, 2008.
61. Gibbons CJ, Stirman SW, Brown GK, Beck AT. Engagement and retention of suicide attempters in clinical research: challenges and solutions. Crisis 2010; 31:62–8.
62. Ejiogu N, Norbeck JH, Mason MA, Cromwell BC, Zonderman AB, Evans MK. Recruitment and retention strategies for minority or poor clinical research participants: lessons from the healthy aging in neighborhoods of diversity across the life span study. Gerontologist 2011; 51(Suppl 1):S33–S45.
63. Graziotti AL, Hammond J, Messinger DS, et al. Maintaining participation and momentum in longitudinal research involving high-risk families. J Nurs Scholarsh 2012; 44:120–6.
64. McPherson KM, Kayes NM. Qualitative research: its practical contribution to physiotherapy. Phys Ther Rev 2012; 17:382–9.
65. Plano Clark VL, Creswell JW. The Mixed Methods Reader. Thousand Oaks, CA, Sage Publication, 2008.
66. Shaw JA, Connelly DM, Zecevic AA. Pragmatism in practice: mixed methods research for physiotherapy. Physiother Theory Pract 2010; 26:510–8.
67. Giddings LS, Grant BM. Mixed methods research for the novice researcher. Contemp Nurse 2006; 23:3–11.
68. Bryman A. Integrating quantitative and qualitative research: how is it done? Qual Res 2006; 6:97–113.
69. Hanson WE, Creswell JW, Clark VLP, Petska KS, Creswell JD. Mixed methods research designs in counseling psychology. J Couns Psychol 2005; 52:224–35.
70. Devers KJ. How will we know ‘good’ qualitative research when we see it? Beginning the dialogue in health services research. Health Serv Res 1999; 34(5 Pt 2):1153–88.
71. Creswell JW, Fetters MD, Ivankova NV. Designing a mixed methods study in primary care. Ann Fam Med 2004; 2:7–12.
72. Sandelowski M. Focus on research methods. Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies. Res Nurs Health 2000; 23:246–55.
73. Mingers J. Combining IS research methods: towards a pluralist methodology. Inf Syst Res 2001; 12:240–59.
74. Leech NL, Onwuegbuzie AJ, Combs JP. Writing publishable mixed research articles: guidelines for emerging scholars in the health sciences and beyond. Int J Mult Res Approaches 2011; 5:7–24.
75. Howe KR. Mixed methods, mixed causes. Qual Inq 2011; 17:166–71.
76. Fisher WP, Stenner AJ. Integrating qualitative and quantitative research approaches via the phenomenological method. Int J Mult Res Approaches 2011; 5:89–103.
77. Giddings LS, Grant BM. A Trojan Horse for positivism? A critique of mixed methods research. Adv Nurs Sci 2007; 30:52–60.
Supporting Information
Additional Supporting Information may be found in the online version of this article at the publisher's web-site:
Appendix S1. Interview guide.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

Cite article

Cite article

Cite article

OR

Download to reference manager

If you have citation software installed, you can download article citation data to the citation manager of your choice

Share options

Share

Share this article

Share with email
EMAIL ARTICLE LINK
Share on social media

Share access to this article

Sharing links are not relevant where the article is open access and not available if you do not have a subscription.

For more information view the Sage Journals article sharing page.

Information, rights and permissions

Information

Published In

Article first published online: October 31, 2013
Issue published: January 2014

Keywords

  1. adaptive
  2. longitudinal
  3. mixed methods
  4. qualitative
  5. strategies
  6. stroke

Rights and permissions

© 2013 The Authors.
Request permissions for this article.
PubMed: 24176023

Authors

Affiliations

Sandy J. Rutherford
Person Centered Rehabilitation Centre, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
Alice Theadom
National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
Amy Jones
National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
Clare Hocking
School of Rehabilitation and Occupation Studies, Auckland University of Technology, Auckland, New Zealand
Valery Feigin
National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
Rita Krishnamurthi
National Institute for Stroke and Applied Neurosciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
Bruce Kent
Person Centered Rehabilitation Centre, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
Suzanne Barker-Collo
Department of Psychology, University of Auckland, Auckland, New Zealand
Kathryn M. McPherson*
Person Centered Rehabilitation Centre, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand

Notes

*
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: [email protected]
Conflicts of interest: None declared.

Metrics and citations

Metrics

Journals metrics

This article was published in International Journal of Stroke.

VIEW ALL JOURNAL METRICS

Article usage*

Total views and downloads: 280

*Article usage tracking started in December 2016


Altmetric

See the impact this article is making through the number of times it’s been read, and the Altmetric Score.
Learn more about the Altmetric Scores



Articles citing this one

Receive email alerts when this article is cited

Web of Science: 2 view articles Opens in new tab

Crossref: 0

  1. The process of adjustment over time following stroke: A longitudinal q...
    Go to citation Crossref Google Scholar
  2. Exploring challenges at 6 months after stroke: what is important to pa...
    Go to citation Crossref Google Scholar

Figures and tables

Figures & Media

Tables

View Options

Get access

Access options

If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below:


Alternatively, view purchase options below:

Purchase 24 hour online access to view and download content.

Access journal content via a DeepDyve subscription or find out more about this option.

View options

PDF/ePub

View PDF/ePub

Full Text

View Full Text