Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study
Autoři:
Emma K. Kjörk aff001; Carlsson Gunnel aff001; Åsa Lundgren-Nilsson aff001; Katharina S. Sunnerhagen aff001
Působiště autorů:
Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden
aff001
Vyšlo v časopise:
PLoS ONE 14(10)
Kategorie:
Research Article
prolekare.web.journal.doi_sk:
https://doi.org/10.1371/journal.pone.0223338
Souhrn
Purpose
The aim of this study was to explore the experiences, needs, and preferences regarding follow-up perceived by people with stroke and healthcare professionals.
Methods
This is a qualitative exploratory study using focus groups. Patients and healthcare professionals, participating in a clinical visit in primary care or specialised care, were purposively sampled. Data were analysed using a framework of analysis developed by Krueger.
Results
Focus groups were conducted with two patient groups (n = 10, range 45–78 years) and two multidisciplinary healthcare professional groups (n = 8, range 35–55 years). The overarching theme elucidates stroke as a long-term condition requiring complex follow-up. Three organisational themes and six subthemes were identified. People with stroke discovered feelings and changes after returning home. In daily life, problems and feelings of abandonment became evident. Participants expressed experiences of unequal access to health care services. Barriers for accessing appropriate treatment and support included difficulties in communicating one’s needs and lack of coherent follow-up. Follow-up activities were well functioning in certain clinics but did not provide continuity over the long term. Participants made suggestions for a comprehensive, planned, and tailored follow-up to meet patient needs.
Conclusion
Comprehensive long-term follow-up that is accessible to all patients is essential for equal support. Our findings raised awareness about problems discovered after returning home and the obstacles individuals face in communicating their needs. Structured follow-up, which is individually tailored, can empower patients.
Klíčová slova:
stroke – Health care – Health care providers – Cognitive impairment – Ischemic stroke – Qualitative studies – Health education and awareness – Primary care
Zdroje
1. Crichton SL, Bray BD, McKevitt C, Rudd AG, Wolfe CD. Patient outcomes up to 15 years after stroke: survival, disability, quality of life, cognition and mental health. J Neurol Neurosurg Psychiatry. 2016;87(10):1091–8. doi: 10.1136/jnnp-2016-313361 27451353.
2. McKevitt C, Fudge N, Redfern J, Sheldenkar A, Crichton S, Rudd AR, et al. Self-reported long-term needs after stroke. Stroke. 2011;42(5):1398–403. doi: 10.1161/STROKEAHA.110.598839 21441153.
3. Ullberg T, Zia E, Petersson J, Norrving B. Perceived Unmet Rehabilitation Needs 1 Year After Stroke: An Observational Study From the Swedish Stroke Register. Stroke. 2016;47(2):539–41. doi: 10.1161/STROKEAHA.115.011670 26732564.
4. Tistad M, Tham K, von Koch L, Ytterberg C. Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study. BMC Neurol. 2012;12(1):40.
5. Lynch EA, Cadilhac DA, Luker JA, Hillier SL. Inequities in access to inpatient rehabilitation after stroke: an international scoping review. Top Stroke Rehabil. 2017:1–8. doi: 10.1080/10749357.2017.1366010 28835194.
6. Norrving B, Barrick J, Davalos A, Dichgans M, Cordonnier C, Guekht A, et al. Action Plan for Stroke in Europe 2018–2030. European Stroke Journal. 2018;3(4):309–36. doi: 10.1177/2396987318808719 31236480
7. Cumming TB, Marshall RS, Lazar RM. Stroke, cognitive deficits, and rehabilitation: still an incomplete picture. Int J Stroke. 2013;8(1):38–45. doi: 10.1111/j.1747-4949.2012.00972.x 23280268.
8. Hou S-I. Health Education Theoretical Concepts, Effective Strategies and Core Competencies. Health promotion practice. 2014;15(5):619–21.
9. 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
10. Stevens E, Emmett E, Wang DY, McKevitt C, Wolfe CD. The Burden Of Stroke In Europe Report London KC, editor. London: SAFE Stroke Alliance For Europe 2017.
11. Lindsay P, Furie KL, Davis SM, Donnan GA, Norrving B. World stroke organization global stroke services guidelines and action plan. Int J Stroke. 2014;9(A100):4–13.
12. Lindsay M, Norrving B, Furie K, Donnan G, Langhorne P, Davis S. Community Reintegration And Long Term Recovery [Internet]. Geneva: World Stroke Organization; 2016. Available from: http://www.world-stroke.org/images/GSGAAP/Community_Reintegration_And_Long_Term_Recovery.pdf.
13. Pindus DM, Mullis R, Lim L, Wellwood I, Rundell AV, Aziz NAA, et al. Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services–A systematic review and meta-ethnography. PLoS One. 2018;13(2). doi: 10.1371/journal.pone.0192533 29466383
14. Martinsen R, Kirkevold M, Sveen U. Young and midlife stroke survivors' experiences with the health services and long-term follow-up needs. J Neurosci Nurs. 2015;47(1):27–35. Epub 2015/01/08. doi: 10.1097/JNN.0000000000000107 25565592.
15. VanderKaay S, Moll SE, Gewurtz RE, Jindal P, Loyola-Sanchez A, Packham TL, et al. Qualitative research in rehabilitation science: opportunities, challenges, and future directions. Disabil Rehabil. 2018;40(6):705–13. Epub 2016/12/16. doi: 10.1080/09638288.2016.1261414 27973927.
16. Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet. 2001;358(9280):483–8. doi: 10.1016/S0140-6736(01)05627-6 11513933.
17. Ivanoff SD, Hultberg J. Understanding the multiple realities of everyday life: basic assumptions in focus-group methodology. Scand J Occup Ther. 2006;13(2):125–32. 16856469.
18. Kjörk EK, Carlsson G, Sunnerhagen KS, Lundgren-Nilsson Å. Experiences using the poststroke checklist in Sweden with a focus on feasibility and relevance: a mixed-method design. BMJ Open. 2019;9(5):e028218. doi: 10.1136/bmjopen-2018-028218 31072862
19. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6).
20. Krueger RA. Focus groups: A practical guide for applied research. 5th ed. London: Sage publications; 2014.
21. Malterud K, Siersma VD, Guassora AD. Sample Size in Qualitative Interview Studies: Guided by Information Power. Qual Health Res. 2015. Epub 2015/11/29. doi: 10.1177/1049732315617444 26613970.
22. Krueger RA, Casey MA. Focus groups: A practical guide for applied research: Sage; 2009.
23. Lincoln YS GE. Naturalistic Inquiry. The Blackwell Encyclopedia of Sociology. Beverly Hills, Calif: Sage; 1985. p. 416
24. Taule T, Strand LI, Skouen JS, Råheim M. Striving for a life worth living: stroke survivors' experiences of home rehabilitation. Scand J Caring Sci. 2015;29(4):651–61. doi: 10.1111/scs.12193 25648326
25. Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, et al. Person-centered care—Ready for prime time. Eur J Cardiovasc Nurs. 2011;10(4):248–51. doi: 10.1016/j.ejcnurse.2011.06.008 21764386
26. Langhorne P, Holmqvist LW. Early supported discharge after stroke. J Rehabil Med. 2007;39(2):103–8. Epub 2007/03/14. doi: 10.2340/16501977-0042 17351690.
27. Walters K, Iliffe S, Orrell M. An exploration of help-seeking behaviour in older people with unmet needs. Fam Pract. 2001;18(3):277–82. doi: 10.1093/fampra/18.3.277 11356734
28. Kjörk E, Blomstrand C, Carlsson G, Lundgren-Nilsson A, Gustafsson C. Daily life consequences, cognitive impairment, and fatigue after transient ischemic attack. Acta Neurol Scand. 2015;133(2):103–10. doi: 10.1111/ane.12435 25955112.
29. Lawton J, Rankin D, Elliott J. Is Consulting Patients About Their Health Service Preferences a Useful Exercise? Qual Health Res. 2013;23(7):876–86. doi: 10.1177/1049732313485161 23618684
30. Ullberg T, Zia E, Petersson J, Norrving B. Changes in functional outcome over the first year after stroke: an observational study from the Swedish stroke register. Stroke. 2015;46(2):389–94. doi: 10.1161/STROKEAHA.114.006538 25538204.
31. Philp I, Brainin M, Walker MF, Ward AB, Gillard P, Shields AL, et al. Development of a poststroke checklist to standardize follow-up care for stroke survivors. J Stroke Cerebrovasc Dis. 2013;22(7):e173–80. doi: 10.1016/j.jstrokecerebrovasdis.2012.10.016 23265778.
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