The Experiences of Couples Affected by Stroke and Nurses Managing Patient Rehabilitation: A Descriptive Study in Singapore.
Journal
The journal of nursing research : JNR
ISSN: 1948-965X
Titre abrégé: J Nurs Res
Pays: China (Republic : 1949- )
ID NLM: 101128757
Informations de publication
Date de publication:
Oct 2020
Oct 2020
Historique:
pubmed:
23
6
2020
medline:
25
6
2021
entrez:
23
6
2020
Statut:
ppublish
Résumé
Stroke in a family affects both patients and their spousal caregivers. Despite advances in the medical management of stroke, less is known about the social and cultural factors that impact couples regarding stroke recovery. The purpose of this study was to explore the experiences of stroke from the perspectives of couples affected by stroke and the nurses managing patient rehabilitation. An interpretive descriptive study was conducted. Purposive sampling was used to enroll 17 participants, comprising eight nurses, five spousal caregivers, and four stroke survivors. Individual, in-depth interviews were performed at a rehabilitation hospital in Singapore in June 2018. The primary theme was the diverse meanings of stroke recovery attributed to limited conversations about the care decisions made by couples and rehabilitation nurses. The second theme was the challenges in nursing responsibilities that hindered the recovery of patients with stroke. The meaning of recovery differs between patients and their informal and formal care providers. This issue should be explored in patient-provider conversations, as these conversations highlight the values and preferences that affect the stroke recovery trajectory. Enhancing shared decision making by patients, spousal caregivers, and healthcare providers during the stroke trajectory may promote the alignment of values that are critical to the stroke recovery experience. Further research into whether and how to incorporate shared decision making in rehabilitation hospital settings as an interventional component is warranted to better support stroke survivors before discharge.
Sections du résumé
BACKGROUND
BACKGROUND
Stroke in a family affects both patients and their spousal caregivers. Despite advances in the medical management of stroke, less is known about the social and cultural factors that impact couples regarding stroke recovery.
PURPOSE
OBJECTIVE
The purpose of this study was to explore the experiences of stroke from the perspectives of couples affected by stroke and the nurses managing patient rehabilitation.
METHODS
METHODS
An interpretive descriptive study was conducted. Purposive sampling was used to enroll 17 participants, comprising eight nurses, five spousal caregivers, and four stroke survivors. Individual, in-depth interviews were performed at a rehabilitation hospital in Singapore in June 2018.
RESULTS
RESULTS
The primary theme was the diverse meanings of stroke recovery attributed to limited conversations about the care decisions made by couples and rehabilitation nurses. The second theme was the challenges in nursing responsibilities that hindered the recovery of patients with stroke.
CONCLUSIONS/IMPLICATIONS FOR PRACTICE
CONCLUSIONS
The meaning of recovery differs between patients and their informal and formal care providers. This issue should be explored in patient-provider conversations, as these conversations highlight the values and preferences that affect the stroke recovery trajectory. Enhancing shared decision making by patients, spousal caregivers, and healthcare providers during the stroke trajectory may promote the alignment of values that are critical to the stroke recovery experience. Further research into whether and how to incorporate shared decision making in rehabilitation hospital settings as an interventional component is warranted to better support stroke survivors before discharge.
Identifiants
pubmed: 32568954
doi: 10.1097/jnr.0000000000000392
pii: 00134372-202010000-00004
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e113Références
Anderson S., Keating N., Wilson D. (2017). Reconciling marriage and care after stroke. Canadian Journal on Aging, 36(3), 386–401. https://doi.org/10.1017/S0714980817000241
doi: 10.1017/S0714980817000241
Armstrong M. J. (2017). Shared decision-making in stroke: An evolving approach to improved patient care. Stroke and Vascular Neurology, 2(2), 84–87. https://doi.org/10.1136/svn-2017-000081
doi: 10.1136/svn-2017-000081
Armstrong M. J., Shulman L. M., Vandigo J., Mullins C. D. (2016). Patient engagement and shared decision-making: What do they look like in neurology practice?Neurology Clinical Practice, 6(2), 190–197. https://doi.org/10.1212/CPJ.0000000000000240
doi: 10.1212/CPJ.0000000000000240
Bham Z., Ross E. (2005). Traditional and western medicine: Cultural beliefs and practices of south African Indian Muslims with regard to stroke. Ethnicity & Disease, 15(4), 548–554.
Camak D. J. (2015). Addressing the burden of stroke caregivers: A literature review. Journal of Clinical Nursing, 24(17–18), 2376–2382. https://doi.org/10.1111/jocn.12884
doi: 10.1111/jocn.12884
Centers for Disease Control and Prevention. (2018). Recovering from stroke. https://www.cdc.gov/stroke/recovery.htm
Charles C., Gafni A., Whelan T., O'Brien M. A. (2006). Cultural influences on the physician-patient encounter: The case of shared treatment decision-making. Patient Education and Counselling, 63(3), 262–267. https://doi.org/10.1016/j.pec.2006.06.018
doi: 10.1016/j.pec.2006.06.018
Clarke J. (1991). Moral dilemmas in nursing research. Nursing Standard, 5(50), 22–25. https://doi.org/10.7748/ns.5.50.22.s64
doi: 10.7748/ns.5.50.22.s64
Conrad P., Barker K. K. (2010). The social construction of illness: Key insights and policy implications. Journal of Health and Social Behavior, 51(Suppl.), S67–S79. https://doi.org/10.1177/0022146510383495
doi: 10.1177/0022146510383495
Coombs U. E. (2007). Spousal caregiving for stroke survivors. Journal of Neuroscience Nursing, 39(2), 112–119. https://doi.org/10.1097/01376517-200704000-00008
doi: 10.1097/01376517-200704000-00008
Corbin J., Strauss A. (2014). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th ed.). SAGE.
Deber R. B. (1996). Shared decision making in the real world. Journal of General Internal Medicine, 11(6), 377–378. https://doi.org/10.1007/BF02600052
doi: 10.1007/BF02600052
Eckman M. H., Wise R. E., Naylor K., Arduser L., Lip G. Y., Kissela B., Flaherty M., Kleindorfer D., Khan F., Schauer D. P., Kues J., Costea A. (2015). Developing an atrial fibrillation guideline support tool (AFGuST) for shared decision making. Current Medical Research and Opinion, 31(4), 603–614. https://doi.org/10.1185/03007995.2015.1019608
doi: 10.1185/03007995.2015.1019608
Feigin V. L., Forouzanfar M. H., Krishnamurthi R., Mensah G. A., Connor M., Bennett D. A., Moran A. E., Sacco R. L., Anderson L., Truelsen T., O'Donnell M., Venketasubramanian N., Barker-Collo S., Lawes C. M. M., Wang W., Shinohara Y., Witt E., Ezzati M., Naghavi M., … Global Burden of Diseases, Injuries, and Risk Factors Study 2010 (GBD 2010) and the GBD Stroke Experts Group. (2014). Global and regional burden of stroke during 1990–2010: Findings from the Global Burden of Disease Study 2010. The Lancet, 383(9913), 245–254. https://doi.org/10.1016/S0140-6736(13)61953-4
doi: 10.1016/S0140-6736(13)61953-4
Ferguson C., Hendriks J. (2017). Partnering with patients in shared decision-making for stroke prevention in atrial fibrillation. European Journal of Cardiovascular Nursing, 16(3), 178–180. https://doi.org/10.1177/1474515116685193
doi: 10.1177/1474515116685193
Forbes D. A., Finkelstein S., Blake C. M., Gibson M., Morgan D. G., Markle-Reid M., Culum I., Thiessen E. (2012). Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: An interpretive descriptive study. Rural and Remote Health, 12(4), 2201.
Fouka G., Mantzorou M. (2011). What are the major ethical issues in conducting research? Is there a conflict between the research ethics and the nature of nursing?Health Science Journal [Online], 5(1), 3–14. http://www.hsj.gr/medicine/what-are-the-major-ethical-issues-in-conducting-research-is-there-a-conflict-between-the-research-ethics-and-the-nature-of-nursing.php?aid=3485
Gillon R. (1985). "Primum non nocere" and the principle of non-maleficence. British Medical Journal, 291(6488), 130–131. https://doi.org/10.1136/bmj.291.6488.130
doi: 10.1136/bmj.291.6488.130
Goffman E. (2009). Stigma: Notes on the management of spoiled identity. Simon and Schuster.
Hunt M. R. (2009). Strengths and challenges in the use of interpretive description: Reflections arising from a study of the moral experience of health professionals in humanitarian work. Qualitative Health Research, 19(9), 1284–1292. https://doi.org/10.1177/1049732309344612
doi: 10.1177/1049732309344612
Jeanfreau S. G., Jack L. Jr. (2010). Appraising qualitative research in health education: Guidelines for public health educators. Health Promotion Practice, 11(5), 612–617. https://doi.org/10.1177/1524839910363537
doi: 10.1177/1524839910363537
Joseph-Williams N., Elwyn G., Edwards A. (2014). Knowledge is not power for patients: A systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Education and Counselling, 94(3), 291–309. https://doi.org/10.1016/j.pec.2013.10.031
doi: 10.1016/j.pec.2013.10.031
Kaiser K., Cheng W. Y., Jensen S., Clayman M. L., Thappa A., Schwiep F., Chawla A., Goldberger J. J., Col N., Schein J. (2015). Development of a shared decision-making tool to assist patients and clinicians with decisions on oral anticoagulant treatment for atrial fibrillation. Current Medical Research & Opinion, 31(12), 2261–2272. https://doi.org/10.1185/03007995.2015.1096767
doi: 10.1185/03007995.2015.1096767
Kallio H., Pietila A. M., Johnson M., Kangasniemi M. (2016). Systematic methodological review: Developing a framework for a qualitative semi-structured interview guide. Journal of Advanced Nursing, 72(12), 2954–2965. https://doi.org/10.1111/jan.13031
doi: 10.1111/jan.13031
Kim J. S. (2014). Stroke in Asia: A global disaster. International Journal of Stroke, 9(7), 856–857. https://doi.org/10.1111/ijs.12317
doi: 10.1111/ijs.12317
Kim Y. D., Jung Y. H., Saposnik G. (2016). Traditional risk factors for stroke in East Asia. Journal of Stroke, 18(3), 273–285. https://doi.org/10.5853/jos.2016.00885
doi: 10.5853/jos.2016.00885
King R. B., Ainsworth C. R., Ronen M., Hartke R. J. (2010). Stroke caregivers: Pressing problems reported during the first months of caregiving. Journal of Neuroscience Nursing, 42(6), 302–311. https://doi.org/10.1097/JNN.0b013e3181f8a575
doi: 10.1097/JNN.0b013e3181f8a575
Lutz B. J., Young M. E., Cox K. J., Martz C., Creasy K. R. (2011). The crisis of stroke: Experiences of patients and their family caregivers. Topics in Stroke Rehabilitation, 18(6), 786–797. https://doi.org/10.1310/tsr1806-786
doi: 10.1310/tsr1806-786
Marshall C., Rossman G. B. (1999). Designing qualitative research (3rd ed.). Sage.
Ministry of Health, Singapore. (2017). Community hospital care—Handbook for patients. https://www.moh.gov.sg/docs/librariesprovider5/resources-statistics/educational-resources/handbook-on-ch-care-for-patients_210617.pdf
National Institute of Neurological Disorders and Stroke. (2018). Stroke statistics. http://www.strokecenter.org/patients/about-stroke/stroke-statistics/
National Registry of Diseases Office, Health Promotion Board. (2018). Singapore stroke registry annual report 2016. https://www.nrdo.gov.sg/docs/librariesprovider3/Publications---Stroke/singapore-stroke-registry-annual-reprot-2016_upload_nrdo_website.pdf?sfvrsn=0
Palmer S., Palmer J. B. (2011). When your spouse has a stroke: Caring for your partner, yourself, and your relationship. Johns Hopkins University Press.
Petera E., Liaschenko J. (2004). Perils of proximity: A spatiotemporal analysis of moral distress and moral ambiguity. Nursing Inquiry, 11(4), 218–225. https://doi.org/10.1111/j.1440-1800.2004.00236.x
doi: 10.1111/j.1440-1800.2004.00236.x
Polit D. F., Beck C. T. (2010). Essentials of nursing research: Appraising evidence for nursing practice (7th ed.). Lippincott Williams & Wilkins.
Saint-Germaine M. A., Longman A. J. (1993). Breast cancer screening among older Hispanic women: Knowledge, attitudes, and practices. Health Education Quarterly, 20(4), 539–553. https://doi.org/10.1177/109019819302000412
doi: 10.1177/109019819302000412
Sandelowski M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8(3), 27–37. https://doi.org/10.1097/00012272-198604000-00005
doi: 10.1097/00012272-198604000-00005
Satink T., Cup E. H. C., de Swart B. J. M., Sanden M. W. G. N. (2018). The perspectives of spouses of stroke survivors on self-management—A focus group study. Disability & Rehabilitation, 40(2), 176–184. https://doi.org/10.1080/09638288.2016.1247920
doi: 10.1080/09638288.2016.1247920
Savage T. A. (2006). Ethical issues in research with patients who have experienced stroke. Topics in Stroke Rehabilitation, 13(4), 1–10. https://doi.org/10.1310/tsr1304-1
doi: 10.1310/tsr1304-1
Shay L. A., Lafata J. E. (2015). Where is the evidence? A systematic review of shared decision making and patient outcomes. Medical Decision Making, 35(1), 114–131. https://doi.org/10.1177/0272989X14551638
doi: 10.1177/0272989X14551638
SingHealth Group. (2019). Stroke. https://www.singhealth.com.sg/patient-care/patient-education/stroke
Spillett M. A. (2003). Peer debriefing: Who, what, when, why, how. https://www.thefreelibrary.com/Peer+debriefing%3a+who%2c+what%2c+when%2c+why%2c+how.-a0111848817
Stevenson K. N., Jack S. M., O’Mara L., LeGris J. (2015). Registered nurses' experiences of patient violence on acute care psychiatric inpatient units: An interpretive descriptive study. BMC Nursing, 14, 35. https://doi.org/10.1186/s12912-015-0079-5
doi: 10.1186/s12912-015-0079-5
Stroke Foundation of Australia. (2019). Grief after stroke. https://strokefoundation.org.au/Blog/2015/05/19/Grief-after-stroke
Thorne S. (2008). Interpretive description. Left Coast Press.
Thorne S., Kirkham S. R., MacDonald-Emes J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing and Health, 20(2), 169–177. https://doi.org/10.1002/(SICI)1098-240X(199704)20:2<169::AID-NUR9>3.0.CO;2-I
doi: 10.1002/(SICI)1098-240X(199704)20:2<169::AID-NUR9>3.0.CO;2-I
Tobin G. A., Begley C. M. (2004). Methodological rigour within a qualitative framework. Journal of Advanced Nursing, 48(4), 388–396. https://doi.org/10.1111/j.1365-2648.2004.03207.x
doi: 10.1111/j.1365-2648.2004.03207.x
Venketasubramanian N., Yoon B. W., Pandian J., Navarro J. C. (2017). Stroke epidemiology in South, East, and South-East Asia: A review. Journal of Stroke, 19(3), 286–294. https://doi.org/10.5853/jos.2017.00234
doi: 10.5853/jos.2017.00234
Visvanathan A., Dennis M., Mead G., Whiteley W. N., Lawton J., Doubal F. N. (2017). Shared decision making after severe stroke—How can we improve patient and family involvement in treatment decisions?International Journal of Stroke, 12(9), 920–922. https://doi.org/10.1177/1747493017730746
doi: 10.1177/1747493017730746
World Health Organization. (2019). Stroke, cerebrovascular accident. http://www.emro.who.int/health-topics/stroke-cerebrovascular-accident/index.html