Experiences of chain of care and rehabilitation after stroke: a qualitative study of persons discharged to skilled nursing facilities before returning home
DOI:
https://doi.org/10.2340/jrm.v56.35240Keywords:
Stroke, Rehabilitation, Skilled nursing facility, independent living, InterviewsAbstract
Objective: To explore how people with stroke, discharged to skilled nursing facilities before returning home, experience the chain of care and rehabilitation.
Design: Qualitative, semi-structured interview design.
Methods: Thirteen stroke survivors discharged from a stroke unit to a skilled nursing facility before returning to independent living participated. Semi-structured telephone interviews were conducted 2–5 months after stroke and analysed with content analysis.
Results: The analysis resulted in three categories, Organizational processes, critical and complex, Rehabilitation, the right support at the right time and Adaptation to the changed situation, with a total of 9 subcategories. The informants perceived low participation in planning and goalsetting and limited information. Support from the healthcare services was important to proceed with improvements although the amount of supported training varied. Factors hindering and facilitating managing everyday life were described, as well as lingering uncertainty of what the future would be like.
Conclusion: Support and rehabilitation as well as individuals’ needs varied, throughout the chain of care. To enable participation in the rehabilitation, assistance in setting goals and repeated information is warranted. Tailored care and rehabilitation throughout the chain of care should be provided, followed up at home, and coordinated for smooth transitions between organizations.
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References
National Board of Health and Welfare. National Guidelines for Stroke Care – support for governance and management [updated 2020 Jan; cited 2023 Oct 10]. Available from: https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/nationella-riktlinjer/2020-1-6545.pdf
World Health Organization. Rehabilitation [updated 2023; cited 2023 Oct 10]. Available from: https://www.who.int/news-room/fact-sheets/detail/rehabilitation
Lexell J RFM. Chapter 1, Modern rehabilitation: a process with several parts In: Rehabiliteringsmetodik. Lund: Studentlitteratur; 2017.
Dromerick AW, Geed S, Barth J, Brady K, Giannetti ML, Mitchell A et al. Critical Period After Stroke Study (CPASS): a phase II clinical trial testing an optimal time for motor recovery after stroke in humans. Proc Natl Acad Sci U S A 2021; 11: e2026676118.
https://doi.org/10.1073/pnas.2026676118. DOI: https://doi.org/10.1073/pnas.2026676118
National Board of Health and Welfare. About the Swedish healthcare system [updated 2020 Sep 01; cited 2023 Oct 10]. Available from: https://www.socialstyrelsen.se/en/about-us/healthcare-for-visitors-to-sweden/about-the-swedish-healthcare-system/
Langhorne P, Ramachandra S; Stroke Unit Trialists’ Collaboration. Organised inpatient (stroke unit) care for stroke: network meta-analysis. Cochrane Database Syst Rev 2020; 4: CD000197.
https://doi.org/10.1002/14651858.CD000197.pub4. DOI: https://doi.org/10.1002/14651858.CD000197.pub4
Riks-Stroke, the Swedish Stroke Register. Annual report 2022 [updated 2023 Sep; cited 2023 Oct 10]. Available from: https://www.riksstroke.org/wp-content/uploads/2023/09/Arsrapporten-2022-preliminar-230919.pdf
UnitedHealthcare. What’s the difference between a skilled nursing facility and a nursing home? [updated 2023; cited 2023 Oct 10]. Available from: https://www.uhc.com/news-articles/medicare-articles/whats-the-difference-between-a-skilled-nursing-facility-and-a-nursing-home
National Board of Health and Welfare. Proposals to develop care for the most sick elderly [updated 2015 Feb; cited 2023 April 10]. Available from: https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/ovrigt/2015-2-45.pdf
Krishnan S, Hay CC, Pappadis MR, Deutsch A, Reistetter TA. Stroke survivors’ perspectives on post-acute rehabilitation options, goals, satisfaction, and transition to home. J Neurol Phys Ther 2019; 43: 160–167.
https://doi.org/10.1097/NPT.0000000000000281 DOI: https://doi.org/10.1097/NPT.0000000000000281
Olofsson A, Andersson SO, Carlberg B. ‘If only I manage to get home I’ll get better’: interviews with stroke patients after emergen-cy stay in hospital on their experiences and needs. Clin Rehabil 2005; 19: 433–440.
https://doi.org/10.1191/0269215505cr788oa DOI: https://doi.org/10.1191/0269215505cr788oa
Nordin Å, Sunnerhagen KS, Axelsson ÅB. Patients’ expectations of coming home with Very Early Supported Discharge and home rehabilitation after stroke: an interview study. BMC Neurol 2015; 15: 235.
https://doi.org/10.1186/s12883-015-0492-0 DOI: https://doi.org/10.1186/s12883-015-0492-0
Kjörk EK, Gunnel C, Lundgren-Nilsson Å, Sunnerhagen KS. Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: a focus group study. PLoS One 2019; 14: e0223338.
https://doi.org/10.1371/journal.pone.0223338 DOI: https://doi.org/10.1371/journal.pone.0223338
Lin S, Wang C, Wang Q, Xie S, Tu Q, Zhang H, et al. The experience of stroke survivors and caregivers during hospital-to-home transitional care: a qualitative longitudinal study. Int J Nurs Stud 2022; 130: 104213.
https://doi.org/10.1016/j.ijnurstu.2022.104213 DOI: https://doi.org/10.1016/j.ijnurstu.2022.104213
Eilertsen G, Kirkevold M, Bjørk IT. Recovering from a stroke: a longitudinal, qualitative study of older Norwegian women. J Clin Nurs 2010; 19: 2004–2013.
https://doi.org/10.1111/j.1365-2702.2009.03138.x DOI: https://doi.org/10.1111/j.1365-2702.2009.03138.x
Tistad M, von Koch L, Sjöstrand C, Tham K, Ytterberg C. What aspects of rehabilitation provision contribute to self-reported met needs for rehabilitation one year after stroke: amount, place, operator or timing? Health Expect 2013; 16: 24–35.
https://doi.org/10.1111/hex.12095 DOI: https://doi.org/10.1111/hex.12095
Chen L, Xiao LD, Chamberlain D, Newman P. Enablers and barriers in hospital-to-home transitional care for stroke survivors and caregivers: a systematic review. J Clin Nurs 2021; 30: 2786–2807.
https://doi.org/10.1111/jocn.15807 DOI: https://doi.org/10.1111/jocn.15807
Kvale S, Svend B. Den kvalitativa forskningsintervjun [The qualitative research interview]. Lund: Studentlitteratur; 2015.
Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24: 105–112.
https://doi.org/10.1016/j.nedt.2003.10.001 DOI: https://doi.org/10.1016/j.nedt.2003.10.001
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: 349–357.
https://doi.org/10.1093/intqhc/mzm042 DOI: https://doi.org/10.1093/intqhc/mzm042
Asplund K, Hulter Åsberg K, Appelros P, Bjarne D, Eriksson M, Johansson A et al. The Riks-Stroke story: building a sustainable national register for quality assessment of stroke care. Int J Stroke 2011; 6: 99–108.
https://doi.org/10.1111/j.1747-4949.2010.00557.x DOI: https://doi.org/10.1111/j.1747-4949.2010.00557.x
Pessah-Rassmusen H, et al. Post stroke checklist. Region Skåne [updated 2018; cited 2021 Jul]. Available from: https://vardgivare.skane.se/siteassets/1.-vardriktlinjer/regionala-riktlinjer---fillistning/checklista_2018-final.pdf
Isaksson E, Wester P, Laska AC, Näsman P, Lundström E. Validation of the Simplified Modified Rankin Scale Questionnaire. Eur Neurol 2020; 83: 493–499.
https://doi.org/10.1159/000510721 DOI: https://doi.org/10.1159/000510721
World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving hu-man subjects. JAMA 2013; 310: 2191–2194.
https://doi.org/10.1001/jama.2013.281053 DOI: https://doi.org/10.1001/jama.2013.281053
Riks-Stroke, the Swedish Stroke Register. Annual report Stroke 2006 [updated 2007; cited 2023 Oct 10]. Available from: https://www.riksstroke.org/wp-content/uploads/2014/05/Rapport06.pdf
Region Skåne. My planning [updated 2023 Jul 26; cited 2023 Oct 10]. Available from: https://vardgivare.skane.se/it/it-stod-och-tjanster-a-o/mina-planer/
Abrahamson V, Wilson PM. How unmet are unmet needs post-stroke? A policy analysis of the six-month review. BMC Health Serv Res 2019; 19: 480.
https://doi.org/10.1186/s12913-019-4210-2 DOI: https://doi.org/10.1186/s12913-019-4210-2
Hu X SSK. The stroke rehabilitation chain of care: how to make it cost-effective. Läkartidningen [updated 2021 Sep 08; cited 2023 Oct 10]. Available from: https://lakartidningen.se/klinik-och-vetenskap-1/artiklar-1/temaartikel/2021/09/vardkedjan-for-strokerehab-sa-kan-den-bli-kostnadseffektiv/
National system for knowledge-driven management within Swedish healthcare. Person-centred and coherent care Stroke and TIA: continued care and rehabilitation [updated 2022 Sep 15; cited 2023 Oct 10]. Available from: https://d2flujgsl7escs.cloudfront.net/external/Vardforlopp_stroke_och_TIA_fortsatt_vard_och_rehabilitering_publicerad_version_220915.pdf
Laver K, Halbert J, Stewart M, Crotty M. Patient readiness and ability to set recovery goals during the first 6 months after stroke. J Allied Health 2010; 39: 149–154.
Brown M, Levack W, McPherson KM, Dean SG, Reed K, Weatherall M et al. Survival, momentum, and things that make me “me”: patients’ perceptions of goal setting after stroke. Disabil Rehabil 2014; 36: 1020–1026.
https://doi.org/10.3109/09638288.2013.825653 DOI: https://doi.org/10.3109/09638288.2013.825653
Riks-Stroke, the Swedish Stroke Register: One year after Stroke, 1-year follow-up 2021 – life situation, fulfilled needs and results of health care services interventions for those falling ill during 2020 [updated 2023 Jun; cited 2023 Oct 10]. Available from: https://www.riksstroke.org/wp-content/uploads/2022/06/Riksstroke-Ett-ar-efter-stroke-2021.pdf
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: 539–541.
https://doi.org/10.1161/STROKEAHA.115.011670 DOI: https://doi.org/10.1161/STROKEAHA.115.011670
National Clinical Guideline Centre. Stroke Rehabilitation: long term rehabilitation after stroke [updated 2013 May 23; cited 2023 Oct 10]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK247494/pdf/Bookshelf_NBK247494.pdf
Talbot LR, Viscogliosi C, Desrosiers J, Vincent C, Rousseau J, Robichaud L. Identification of rehabilitation needs after a stroke: an exploratory study. Health Qual Life Outcomes 2004; 2: 53.
https://doi.org/10.1186/1477-7525-2-53 DOI: https://doi.org/10.1186/1477-7525-2-53
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: 1555–1566.
https://doi.org/10.1080/09638280802639327 DOI: https://doi.org/10.1080/09638280802639327
SCB, Statistics Sweden. Living alone, with a partner or with friends? Findings from the register on households [updated 2019 Oct; cited 2023 Oct 10]. Available from: https://www.scb.se/contentassets/cfe7690018d741798939bd8a6d087219/be0701_2015i2018_br_be51br1901.pdf
Nguyen VQ, PrvuBettger J, Guerrier T, Hirsch MA, Thomas JG, Pugh TM, et al. Factors associated with discharge to home versus discharge to institutional care after inpatient stroke rehabilitation. Arch Phys Med Rehabil 2015; 96: 1297–1303.
https://doi.org/10.1016/j.apmr.2015.03.007 DOI: https://doi.org/10.1016/j.apmr.2015.03.007
Holt A. Using the telephone for narrative interviewing: a research note. Qualitative Rese-arch 2010; 10:113–121.
https://doi.org/10.1177/1468794109348686 DOI: https://doi.org/10.1177/1468794109348686
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