“My life after stroke through a camera lens”- A photovoice study on participation in Sweden


Autoři: Karin Törnbom aff001;  Jörgen Lundälv aff003;  Annie Palstam aff001;  Katharina S. Sunnerhagen aff001
Působiště autorů: Research group for Rehabilitation Medicine, Section for Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden aff001;  Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden aff002;  Department of Social Work, University of Gothenburg, Gothenburg, Sweden aff003
Vyšlo v časopise: PLoS ONE 14(9)
Kategorie: Research Article
doi: https://doi.org/10.1371/journal.pone.0222099

Souhrn

Background

An increasing number of people with stroke live in their communities, yet the understanding of how their reintegration into society can best be facilitated is incomplete. If needs are not sufficiently met and difficulties overcome, it may result in limited participation and decreased life satisfaction for this group. We aimed to understand life after stroke through the lens of participants’ cameras, and hence their views and experiences guided this study.

Methods

By the means of photovoice, an action research method, this study was conducted in a collaborative format with six women and five men after stroke. Participants photographed in everyday life for up to four weeks and then met to discuss all images in a focus group setting. Subsequently, participants gave feedback on the method and discussed the upcoming photography exhibition. All photos and the three focus group discussions were analyzed using a thematic analysis with an inductive approach.

Results

In the focus group discussions, life after stroke were conceptualized through five main themes: a driving force to participate in society; managing everyday life through inventiveness and persistent training; insufficient healthcare and rehabilitation in the long-term perspective; finding meaningful relationships and activities in daily life. Participants’ voices are made clear through selected photos, which aim to present each theme and make results easier to understand.

Conclusions

Participants found new ways to approach everyday life situations and had thereby regained a sense of control in life. However, it was evident that psychological processes towards adaptation were hindered by depression and that some individuals felt alone in an ongoing struggle. Additionally, available interventions a long time after stroke were not flexible enough to address all participants’ needs.

Klíčová slova:

Medicine and health sciences – Neurology – Cerebrovascular diseases – stroke – Ischemic stroke – Hemorrhagic stroke – Vascular medicine – Public and occupational health – Disabilities – Research and analysis methods – Research design – Qualitative studies – Imaging techniques – Photography – Engineering and technology – Equipment – Optical equipment – Cameras – Physical sciences – Physics – Classical mechanics – Reflection


Zdroje

1. Bonita R, Mendis S, Truelsen T, Bogousslavsky J, Toole J, Yatsu F. The global stroke initiative. The Lancet Neurology. 2004;3(7):391–3. doi: 10.1016/S1474-4422(04)00800-2 15207791

2. Langhorne P, Bernhardt J, Kwakkel G. Stroke rehabilitation. Lancet (London, England). 2011;377(9778):1693–702.

3. Tawil SE, Muir KW. Thrombolysis and thrombectomy for acute ischaemic stroke. Clinical medicine (London, England). 2017;17(2):161–5.

4. Maratos M, Huynh L, Tan J, Lui J, Jarus T. Picture This: Exploring the Lived Experience of High-Functioning Stroke Survivors Using Photovoice. Qual Health Res. 2016;26(8):1055–66. doi: 10.1177/1049732316648114 27194645

5. Riksstroke. QUALITY OF THE SWEDISH STROKE CARE 2017. 2017.

6. McKevitt C, Fudge N, Redfern J, Sheldenkar A, Crichton S, Rudd AR, et al. Self-reported long-term needs after stroke. Stroke; a journal of cerebral circulation. 2011;42(5):1398–403.

7. 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. Disability and rehabilitation. 2009;31(2):61–72. doi: 10.1080/09638280701775289 19152154

8. Erikson A, Karlsson G, Tham K. Living with the long-term consequences 11–13 years after stroke: A phenomenological study. Journal of rehabilitation medicine: official journal of the UEMS European Board of Physical and Rehabilitation Medicine. 2016;48(10):847–52.

9. Welfare TNBoHa. The Swedish Disability Policy. Stockholm: Government offices of Sweden; 2014.

10. Tornbom K, Lundalv J, Sunnerhagen KS. Long-term participation 7–8 years after stroke: Experiences of people in working-age. PLoS One. 2019;14(3):e0213447. doi: 10.1371/journal.pone.0213447 30865696

11. Woodman P, Riazi A, Pereira C, Jones F. Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors. Disability and rehabilitation. 2014;36(24):2031–43. doi: 10.3109/09638288.2014.887796 24597937

12. Foster-Fishman P, Nowell B, Deacon Z, Nievar MA, McCann P. Using methods that matter: the impact of reflection, dialogue, and voice. American journal of community psychology. 2005;36(3–4):275–91. doi: 10.1007/s10464-005-8626-y 16389500

13. Sutton-Brown CA. Photovoice: A Methodological Guide. Photography and Culture. 2014;7(2):169–85.

14. Wang CC. Photovoice: a participatory action research strategy applied to women's health. Journal of women's health. 1999;8(2):185–92. 10100132

15. Wang C, Burris MA. Photovoice: concept, methodology, and use for participatory needs assessment. Health education & behavior: the official publication of the Society for Public Health Education. 1997;24(3):369–87.

16. Dassah E, Aldersey HM, Norman KE. Photovoice and Persons With Physical Disabilities: A Scoping Review of the Literature. Qual Health Res. 2017;27(9):1412–22. doi: 10.1177/1049732316687731 28682708

17. Tellier M, Rochette A. Falling through the cracks: a literature review to understand the reality of mild stroke survivors. Top Stroke Rehabil. 2009;16(6):454–62. doi: 10.1310/tsr1606-454 20139048

18. Booth T, Booth W. In the frame: Photo voice and mothers with learning difficulties. Disability and Society. 2003;18(4):431–42.

19. Balakrishnan R, Kaplan B, Negron R, Fei K, Goldfinger JZ, Horowitz CR. Life after Stroke in an Urban Minority Population: A Photovoice Project. International journal of environmental research and public health. 2017;14(3).

20. Fitzpatrick AL, Steinman LE, Tu SP, Ly KA, Ton TG, Yip MP, et al. Using photovoice to understand cardiovascular health awareness in Asian elders. Health promotion practice. 2012;13(1):48–54. doi: 10.1177/1524839910364381 21057047

21. Brown K, Worrall L, Davidson B, Howe T. Snapshots of success: An insider perspective on living successfully with aphasia. Aphasiology. 2010;24(10):1267–95.

22. Baum F, MacDougall C, Smith D. Participatory action research. Journal of epidemiology and community health. 2006;60(10):854–7. doi: 10.1136/jech.2004.028662 16973531

23. Mash B. African primary care research: participatory action research. African journal of primary health care & family medicine. 2014;6(1):E1–5.

24. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349–57. doi: 10.1093/intqhc/mzm042 17872937

25. Langemar P. Kvalitativ forskningsmetod i psykologi—att låta en värld öppna sig. Stockholm: LIBER AB 2008.

26. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77–101.

27. Gleeson K. Polytextual Thematic Analysis for visual data—Pinning down the the analytic. In: Reavey P, editor. Visual Methods in Psychology—Using and Interpreting Images in Qualitative Research. New York: Routledge; 2011.

28. Cordova D, Parra-Cardona JR, Blow A, Johnson DJ, Prado G, Fitzgerald HE. 'They don't look at what affects us': The role of ecodevelopmental factors on alcohol and drug use among Latinos with physical disabilities. Ethnicity and Health. 2015;20(1):66–86. doi: 10.1080/13557858.2014.890173 24571535

29. Salter K, Hellings C, Foley N, Teasell R. The experience of living with stroke: a qualitative meta-synthesis. Journal of rehabilitation medicine: official journal of the UEMS European Board of Physical and Rehabilitation Medicine. 2008;40(8):595–602.

30. Murray CD, Harrison B. The meaning and experience of being a stroke survivor: an interpretative phenomenological analysis. Disability and rehabilitation. 2004;26(13):808–16. doi: 10.1080/09638280410001696746 15371053

31. Krishnan S, Pappadis MR, Weller SC, Stearnes M, Kumar A, Ottenbacher KJ, et al. Needs of Stroke Survivors as Perceived by Their Caregivers: A Scoping Review. American journal of physical medicine & rehabilitation / Association of Academic Physiatrists. 2017;96(7):487–505.

32. Hole E, Stubbs B, Roskell C, Soundy A. The patient's experience of the psychosocial process that influences identity following stroke rehabilitation: a metaethnography. TheScientificWorldJournal. 2014;2014:349151. doi: 10.1155/2014/349151 24616623

33. Boger EJ, Demain SH, Latter SM. Stroke self-management: A focus group study to identify the factors influencing self-management following stroke. International journal of nursing studies. 2015;52(1):175–87. doi: 10.1016/j.ijnurstu.2014.05.006 24917370

34. White JH, Magin P, Attia J, Sturm J, Carter G, Pollack M. Trajectories of psychological distress after stroke. Annals of family medicine. 2012;10(5):435–42. doi: 10.1370/afm.1374 22966107

35. Erikson A, Park M, Tham K. Belonging: a qualitative, longitudinal study of what matters for persons after stroke during the one year of rehabilitation. Journal of rehabilitation medicine: official journal of the UEMS European Board of Physical and Rehabilitation Medicine. 2010;42(9):831–8.

36. Pallesen H. Body, coping and self-identity. A qualitative 5-year follow-up study of stroke. Disability and rehabilitation. 2014;36(3):232–41. doi: 10.3109/09638288.2013.788217 23631656

37. Arntzen C, Borg T, Hamran T. Long-term recovery trajectory after stroke: An ongoing negotiation between body, participation and self. Disability and rehabilitation. 2015;37(18):1626–34. doi: 10.3109/09638288.2014.972590 25318537

38. Gallacher K, Morrison D, Jani B, Macdonald S, May CR, Montori VM, et al. Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Med. 2013;10(6):e1001473. doi: 10.1371/journal.pmed.1001473 23824703

39. Mairami FF, Warren N, Allotey PA, Mak JS, Reidpath DD. Documenting the impact of stroke in a middle-income country: a Malaysian case study. Disability and rehabilitation. 2018:1–12.

40. Sadler E, Wolfe CD, Jones F, McKevitt C. Exploring stroke survivors' and physiotherapists' views of self-management after stroke: a qualitative study in the UK. BMJ open. 2017;7(3):e011631. doi: 10.1136/bmjopen-2016-011631 28283483

41. Pearce G, Pinnock H, Epiphaniou E, Parke HL, Heavey E, Griffiths CJ, et al. Experiences of Self-Management Support Following a Stroke: A Meta-Review of Qualitative Systematic Reviews. PLoS One. 2015;10(12):e0141803. doi: 10.1371/journal.pone.0141803 26657458


Článek vyšel v časopise

PLOS One


2019 Číslo 9
Nejčtenější tento týden