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.

Keywords

adaptive longitudinal mixed methods qualitative strategies stroke

Get full access to this article

View all access options for this article.

References

Demain

Wiles

Roberts

McPherson

. Recovery plateau following stroke: fact or fiction? Disabil Rehabil 2006; 28:815–21.

Kayes

McPherson

. Measuring what matters: does ‘objectivity’ mean good science? Disabil Rehabil 2010; 32:1011–9.

McPherson

. What are the boundaries of health and functioning — and who should say what they are. Disabil Rehabil 2006; 28:1473–4.

McPherson

Brander

Taylor

McNaughton

. Consequences of stroke, arthritis and chronic pain-are there important similarities? Disabil Rehabil 2004; 26:988–99.

de Haan

Aaronson

Limburg

Hewer

van Crevel

. Measuring quality of life in stroke. Stroke 1993; 24:320–7.

de Haan

Horn

Limburg

MMDP

Van Der Meulen

JMDP

Bossuyt

. A comparison of five stroke scales with measures of disability, handicap, and quality of life. Stroke 1993; 24:1178–81.

Horgan

O'Regan

Cunningham

Finn

. Recovery after stroke: a 1-year profile. Disabil Rehabil 2009; 31:831–9.

Kirkevold

. The unfolding illness trajectory of stroke. Disabil Rehabil 2002; 24:887–98.

Ironside

Scheckel

Wessels

Bailey

Powers

Seeley

. Experiencing chronic illness: cocreating new understandings. Qual Health Res 2003; 13:171–83.

10.

Eilertsen

Kirkevold

Bjørk

. Recovering from a stroke: a longitudinal, qualitative study of older Norwegian women. J Clin Nurs 2010; 19:2004–13.

11.

Ellis-Hill

Payne

Ward

. 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

. Living with stroke: a phenomenological study. J Adv Nurs 2000; 32:301–9.

13.

Wilson

Kendall

Brooks

. The Expert Patients Programme: a paradox of patient empowerment and medical dominance. Health Soc Care 2007; 15:426–38.

14.

Hart

. System induced setbacks in stroke recovery. Sociol Health Illn 2001; 23:101–23.

15.

Pound

Gompertz

Ebrahim

. Social and practical strategies described by people living at home with stroke. Health Soc Care 1999; 7:120–8.

16.

Reed

Harrington

Duggan

Wood

. Meeting stroke survivors' perceived needs: a qualitative study of a community-based exercise and education scheme. Clin Rehabil 2010; 24:16–26.

17.

Carlsson

Moller

Blomstrand

. Managing an everyday life of uncertainty – A qualitative study of coping in persons with mild stroke. Disabil Rehabil 2009; 31:773–82.

18.

Faircloth

Boylstein

Rittman

Young

Gubrium

. Sudden illness and biographical flow in narratives of stroke recovery. Sociol Health Illn 2004; 26:242–61.

19.

Dyall

Feigin

Brown

. Stroke: a picture of health disparities in New Zealand. Soc Policy N Z 2008; 33:178–91.

20.

Siegert

Ward

Levack

WMM

McPherson

. A Good Lives Model of clinical and community rehabilitation. Disabil Rehabil 2007; 29:1604–15.

21.

Evans

. Positive psychology and Brain Injury rehabilitation. Brain Impair 2011; 12:117–27.

22.

Worrall

Brown

Cruice

. The evidence for a life-coaching approach to aphasia. Aphasiology 2010; 24:497–514.

23.

Grohn

Worrall

Simmons-Mackie

Brown

. The first 3-months post-stroke: what facilitates successfully living with aphasia? Int J Speech-Lang Pathology 2012; 14:390–400.

24.

Krishnamurthi

Jones

Barber

Barker-Collo

McPherson

Bennett

. 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; DOI: 10.1111/ijs.12108.

25.

Sandelowski

. Whatever happened to qualitative description? Res Nurs ealth 2000; 23:334–40.

26.

Charmaz

. Premises, principles, and practices in qualitative research: revisiting the foundations. Qual Health Res 2004; 14:976–93.

27.

Charmaz

. ‘Discovering’ chronic illness: using grounded theory. Soc Sci Med 1990; 30:1161–72.

28.

Krishnamurthi

Witt

Barker-Collo

McPherson

Davis-Martin

Bennett

. Reducing recurrent Stroke: methodology of the motivational interviewing in Stroke (MIST) randomised clinical trial. Int J Stroke 2013; DOI: 10.1111/ijs.12107.

29.

Morse

. Determining sample size. Qual Health Res 2000; 10:3–5.

30.

Sullivan-Bolyai

Bova

Harper

. Developing and refining interventions in persons with health disparities: the use of qualitative description. Nurs Outlook 2005; 53:127–33.

31.

Robison

Wiles

Ellis-Hill

McPherson

Hyndman

Ashburn

. Resuming previously valued activities post-stroke: who or what helps? Disabil Rehabil 2009; 31:1555–66.

32.

Ellis-Hill

Robison

Wiles

McPherson

Hyndman

Ashburn

. 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

. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illn 1983; 5:168–95.

34.

Charmaz

. Stories of suffering: subjective tales and research narratives. Qual Health Res 1999; 9:362–82.

35.

Charmaz

. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Silverman

, editor. London, Sage Publications, 2006.

36.

Mays

Pope

. Assessing quality in qualitative research. BMJ 2000; 320:50–2.

37.

Neergaard

Olesen

Andersen

Sondergaard

. Qualitative description – the poor cousin of health research? BMC Med Res Methodol 2009; 9:52–7.

38.

Banner

Albarran

. Computer-assisted qualitative data analysis software: a review. Can J Cardiovasc Nurs 2009; 19:24–7.

39.

Bergin

. 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

Gastmans

Bryon

Denier

. QUAGOL: a guide for qualitative data analysis. Int J Nurs Stud 2012; 49:360–71.

41.

Juritzen

Grimen

Heggen

. Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees. Nurs Ethics 2011; 18:640–50.

42.

Dresser

. Research oversight and adults with cognitive impairment. Hastings Cen Rep 2003; 33:9–10.

43.

Steinhauser

Clipp

Hays

. Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliat Med 2006; 20:745–54.

44.

Ewing

Rogers

Barclay

McCabe

Martin

Todd

. Recruiting patients into a primary care based study of palliative care: why is it so difficult? Palliat Med 2004; 18:452–9.

45.

Nordentoft

Kappel

. Vulnerable participants in health research: methodological and ethical challenges. J Soc Work Pract 2011; 25:365–76.

46.

Legerski

Bunnell

. The risks, benefits, and ethics of trauma-focused research participation. Ethics Behav 2010; 20:429–42.

47.

Ahern

. Informed consent: are researchers accurately representing risks and benefits? Scand J Caring Sci 2012; 26:671–8.

48.

Campbell

Adams

Wasco

Ahrens

Sefl

. ‘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

Kelly

Morgan

. Participant distress in psychiatric research: a systematic review. Psychol Med 2007; 37:917–26.

50.

Wassink

Chapman

Levy-Milne

Forster-Coull

. Implementing the British Columbia nutrition survey: perspectives of interviewers and facilitators. Can J Diet Pract Res 2004; 65:59–64.

51.

Derrett

Colhoun

. Being a quantitative interviewer: qualitatively exploring interviewers' experiences in a longitudinal cohort study. BMC Med Res Methodol 2011; 11:165.

52.

Dickson-Swift

James

Kippen

Liamputtong

. Doing sensitive research: what challenges do qualitative researchers face? Qual Res 2007; 7:327–53.

53.

Richman

Alexander

True

. Proximity, ethical dilemmas, and community research workers. AJOB Prim Res 2012; 3:19–29.

54.

Logie

Llana

Wangari

Loutfy

. 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

Markovic

Manderson

. ‘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

Schwartz

. Ethics of qualitative research: are there special issues for health services research? Fam Pract 2002; 19:135–9.

57.

Sim

. Addressing conflicts in research ethics: consent and risk of harm. Physiother Res Int 2010; 15:80–7.

58.

Clarke

. Qualitative interviewing: encountering ethical issues and challenges. Nurse Res 2006; 13:19–29.

59.

Emanuel

Wendler

Grady

. What makes clinical research ethical? JAMA 2000; 283:2701–11.

60.

Thorne

. Interpretive Description. Morse

, editor. Walnut Creek, CA, Left Coast Press, Inc, 2008.

61.

Gibbons

Stirman

Brown

Beck

. Engagement and retention of suicide attempters in clinical research: challenges and solutions. Crisis 2010; 31:62–8.

62.

Ejiogu

Norbeck

Mason

Cromwell

Zonderman

Evans

. 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

Hammond

Messinger

. Maintaining participation and momentum in longitudinal research involving high-risk families. J Nurs Scholarsh 2012; 44:120–6.

64.

McPherson

Kayes

. Qualitative research: its practical contribution to physiotherapy. Phys Ther Rev 2012; 17:382–9.

65.

Plano Clark

Creswell

. The Mixed Methods Reader. Thousand Oaks, CA, Sage Publication, 2008.

66.

Shaw

Connelly

Zecevic

. Pragmatism in practice: mixed methods research for physiotherapy. Physiother Theory Pract 2010; 26:510–8.

67.

Giddings

Grant

. Mixed methods research for the novice researcher. Contemp Nurse 2006; 23:3–11.

68.

Bryman

. Integrating quantitative and qualitative research: how is it done? Qual Res 2006; 6:97–113.

69.

Hanson

Creswell

Clark

VLP

Petska

Creswell

. Mixed methods research designs in counseling psychology. J Couns Psychol 2005; 52:224–35.

70.

Devers

. 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

Fetters

Ivankova

. Designing a mixed methods study in primary care. Ann Fam Med 2004; 2:7–12.

72.

Sandelowski

. 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

. Combining IS research methods: towards a pluralist methodology. Inf Syst Res 2001; 12:240–59.

74.

Leech

Onwuegbuzie

Combs

. 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

. Mixed methods, mixed causes. Qual Inq 2011; 17:166–71.

76.

Fisher

Stenner

. Integrating qualitative and quantitative research approaches via the phenomenological method. Int J Mult Res Approaches 2011; 5:89–103.

77.

Giddings

Grant

. A Trojan Horse for positivism? A critique of mixed methods research. Adv Nurs Sci 2007; 30:52–60.