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Older people and decision-making following acute stroke in China: ‘hiding’ as a barrier to active involvement

Published online by Cambridge University Press:  19 June 2015

YUE WANG  and
MIKE NOLAN
YUE WANG
Affiliation:
School of Nursing, Tianjin Medical University, People's Republic of China
MIKE NOLAN*
Affiliation:
The School of Nursing & Midwifery, University of Sheffield, UK
*
Address for correspondence: Mike Nolan, The School of Nursing & Midwifery, University of Sheffield, Barber House Annexe, 3a Clarkehouse Road, Sheffield S10 2LA, UK E-mail: m.r.nolan@sheffield.ac.uk
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Abstract

Decision-making among older patients with stroke, their families and professionals has been extensively studied in a Western context, but there has been little prior work in China. The study reported here explored how decision-making took place between older people with stroke, their family carers and professionals in an acute care context in mainland China using a constructivist grounded theory approach. Data were collected through semi-structured interviews, participant observation and documentary analysis. Constant comparative analysis of the data was carried out. This paper focuses on the key social process of ‘hiding’ and its dynamic relationship with the core category ‘keeping the peace’. In order to meet the traditional Chinese cultural value of ‘maintaining harmony’, both family carers and professionals hid essential information from older stroke survivors who, as a consequence, were effectively precluded from playing an active role in major decisions. In understanding ‘hiding’, the paper draws upon both Chinese cultural values and ‘awareness context theory’ and in so doing questions the relevance to the Chinese context of key Western notions such as involvement in health-care decision-making. A better understanding of the experiences of decision-making processes between older people with stroke, their family carers and professionals in China will help professionals to provide the best possible support and care whilst promoting informed decision-making amongst all concerned.

Keywords

decision-makingacute strokeChinaconstructivist grounded theory
Type
Articles
Information
Ageing & Society , Volume 36 , Issue 7 , August 2016 , pp. 1526 - 1554
Copyright
Copyright © Cambridge University Press 2015 

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References

Alaszewski, H., King, A., Alaszewski, A. and Potter, J. 2008. Communicating Information to Stroke Survivors: A Pilot Study. Centre for Health Services Studies, University of Kent, UK. Available online at http://www.kent.ac.uk/chss/researchcentre/docs/communicating_information.pdf [Accessed 30 December 2009].Google Scholar
Almborg, A. H., Ulander, K., Thulin, A. and Berg, S. 2008. Patients’ perceptions of their participation in discharge planning after acute stroke. Journal of Clinical Nursing, 18, 6, 199–209.CrossRefGoogle ScholarPubMed
Andersson, A. and Hansebo, G. 2009. Elderly peoples’ experience of nursing care after a stroke: from a gender perspective. Journal of Advanced Nursing, 65, 10, 2038–45.CrossRefGoogle ScholarPubMed
Andrews, T. and Nathaniel, A. K. 2009. Awareness of dying revisited. Journal of Nursing Care Quality, 24, 3, 189–93.CrossRefGoogle ScholarPubMed
Ben Natan, M., Shaher, I. and Garfinkel, D. 2009. Disclosing bad news to patients with life-threatening illness: differences in attitude between physicians and nurses in Israel. International Journal of Palliative Care Nursing, 15, 6, 276–81.CrossRefGoogle ScholarPubMed
Berg, B. L. 2007. Qualitative Research Methods for the Social Sciences. Sixth edition, Pearson/Allyn & Bacon, Boston.Google Scholar
Berger, J. T. 1998. Culture and ethnicity in clinical care. Archives of Internal Medicine, 158, 19, 2085–90.CrossRefGoogle ScholarPubMed
Blackhall, L. J., Murphy, S. T., Frank, G., Michel, V. and Azen, S. 1995. Ethnicity and attitudes toward patient autonomy. Journal of the American Medical Association, 274, 10, 820–5.CrossRefGoogle ScholarPubMed
Bowman, K. W. and Singer, P. A. 2001. Chinese seniors’ perspectives on end-of-life decisions. Social Science & Medicine, 53, 4, 455–64.CrossRefGoogle ScholarPubMed
Brereton, L. and Nolan, M. 2002. ‘Seeking’: a key activity for new family carers of stroke survivors. Journal of Clinical Nursing, 11, 1, 22–31.CrossRefGoogle ScholarPubMed
Brereton, L. and Nolan, M. 2003. Seeking partnerships between family and professional carers: stroke as a case in point. In Nolan, M., Lundh, U., Grant, G. and Keady, J. (eds), Partnerships in Family Care: Understanding the Caregiving Career. Open University Press, Maidenhead, UK, 50–68.Google Scholar
Chang, K. C., Tseng, M. C. and Tan, T. Y. 2004. Prehospital delay after acute stroke in Kaohsiung Taiwan. Stroke, 35, 3, 700–4.CrossRefGoogle ScholarPubMed
Charmaz, K. 2006. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage, London.Google Scholar
Chen, G. M. and Starosta, W. J. 1997. Chinese conflict management and resolution: overview and implications. Intercultural Communication Studies, 7, 1, 1–16.Google Scholar
Christensen, J. M. and Anderson, J. D. 1989. Spouse adjustment to stroke: aphasic versus nonaphasic partners. Journal of Communication Disorders, 22, 4, 225–31.CrossRefGoogle ScholarPubMed
Cong, Y. L. 2004. Doctor–family–patient relationship: the Chinese paradigm of informed consent? Journal of Medicine and Philosophy, 29, 2, 149–78.CrossRefGoogle ScholarPubMed
Cornwell, J. 2012. The Care of Frail Older People with Complex Needs: Time for a Revolution. Kings Fund, London.Google Scholar
Da Silva, D. 2012. Helping People Make Decisions. The Health Foundation, London.Google Scholar
Eames, S., Hoffmann, T., Worrall, L. and Read, S. 2010. Stroke patients’ and carers’ perception of barriers to accessing stroke information. Topics in Stroke Rehabilitation, 17, 2, 69–78.CrossRefGoogle ScholarPubMed
Elwyn, T. S., Fettersb, M. D., Sasakic, H. and Tsudad, T. 2002. Responsibility and cancer disclosure in Japan. Social Science & Medicine, 54, 2, 281–93.CrossRefGoogle ScholarPubMed
Glaser, B. G. and Strauss, A. L. 1965. Awareness of Dying. Aldine, Chicago.Google Scholar
Hafsteinsdóttir, T. B., Vergunst, M., Lindeman, E. and Schuurmans, M. 2011. Educational needs of patients with a stroke and their caregivers: a systematic review of the literature. Patient Education and Counseling, 85, 1, 14–25.CrossRefGoogle ScholarPubMed
Health Care Commission 2005. Survey of Patients: Stroke. Commission for Healthcare Audit and Inspection, London. Available online at http://www.rsucardiff.org.uk/resource/HC.StrokePatientSurvery.2005.pdf [Accessed 16 January 2010].Google Scholar
Health Care Commission 2006. Survey of Patients: Caring for People After They Have Had a Stroke – A Follow-up Survey of Patients. Commission for Healthcare Audit and Inspection, London. Available online at http://qualityimprovementscotland.net/nhsqis/files/stroke_survey_update.pdf [Accessed 16 January 2010].Google Scholar
Hedberg, B., Johanson, M. and Cederborg, A. C. 2008. Communicating stroke survivors’ health and further needs for support in care-planning meetings. Journal of Clinical Nursing, 17, 11, 1481–91.CrossRefGoogle ScholarPubMed
Hellström, I., Nolan, M. and Lundh, U. 2005. Awareness context theory and the dynamics of dementia: improving understanding using emergent fit. Dementia, 4, 2, 269–95.CrossRefGoogle Scholar
Hjelmblink, F. 2008. Understanding life after stroke. PhD thesis, Uppsala University, Uppsala, Sweden.Google Scholar
Hoffmann, T. and Cochrane, T. 2009. What education do stroke patients receive in Australian hospitals? Patient Education and Counseling, 77, 2, 187–91.CrossRefGoogle ScholarPubMed
Hornung, C. A., Eleazer, G. P., Strothers, H. S., Wieland, G. D., Eng, C., McCann, R. and Sapir, M. 1998. Ethnicity and decision-makers in a group of frail older people. Journal of the American Geriatrics Society, 46, 3, 280–6.CrossRefGoogle Scholar
Huang, Z. B., Neufeld, R. R., Likourezos, A., Breuer, B., Khaski, A., Milano, E. and Libow, L. S. 2003. Socio-demographic and health characteristics of older Chinese on admission to a nursing home: a cross-racial/ethnic study. Journal of the American Geriatrics Society, 51, 3, 404–9.CrossRefGoogle Scholar
Huby, G., Brook, J. H., Thompson, A. and Tierney, A. 2007. Capturing the concealed: interprofessional practice and older patients’ participation in decision making about discharge after acute hospitalization. Journal of Interprofessional Care, 21, 1, 55–67.CrossRefGoogle ScholarPubMed
Ip, M., Gilligan, T., Koenig, B. and Raffin, T. A. 1998. Ethical decision-making in critical care in Hong Kong. Critical Care Medicine, 26, 3, 447–51.CrossRefGoogle ScholarPubMed
Irish Hospice Foundation 2011. The Ethics of Breaking Bad News. Irish Hospice Foundation, Dublin. Available online at http://hospicefoundation.ie/wp-content/uploads/2013/10/Module-2-The-Ethics-of-Breaking-Bad-News.pdf [Accessed 17 October 2014].Google Scholar
Kahraman, A. and Jones, F. 2009. Factors Influencing and Shaping the Lived Experience After Stroke: A Systematic Review of Qualitative Studies. The Joanna Briggs Institute, Adelaide, Australia. Available online at http://www.joannabriggs.edu.au/protocols/Protocol237.pdf [Accessed 27 November 2009].Google ScholarPubMed
Kapral, M. K., Devon, J., Winter, A., Wang, J., Peters, A. and Bondy, S. J. 2006. Gender differences in stroke care decision making. Medical Care, 44, 1, 70–80.CrossRefGoogle ScholarPubMed
Knight, N. 2006. Reflecting on the paradox of globalisation: China's search for cultural identity and coherence. China: An International Journal, 4, 1, 1–31.CrossRefGoogle Scholar
Lee, E. 1991. Mourning rituals in Chinese culture. In Walsh, F. and McGoldrick, M. (eds), Living Beyond Loss: Death in the Family. W. W. Norton, New York, 201–6.Google Scholar
Liu, L. P., Wang, D., Wong, K. S. L. and Wang, Y. J. 2011. Stroke and stroke care in China: huge burden, significant workload, and a national priority. Stroke, 42, 12, 3651–4.CrossRefGoogle Scholar
Locatelli, C., Piselli, P., Cicercha, M., Raffaele, M., Abbatecola, M. A. and Repitto, L. 2010. Telling bad news to elderly cancer patients: the role of the family caregivers in the choice about non-disclosure – the Gruppo Italia di Oncologia Geriatrica (GIOGer) study. Journal of Geriatric Oncology, 1, 2, 73–80.CrossRefGoogle Scholar
Mackenzie, A., Perry, L., Lockhart, E., Cottee, M., Cloud, G. and Mann, H. 2007. Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring. Disability and Rehabilitation, 29, 2, 111–21.CrossRefGoogle ScholarPubMed
Mangset, M., Dahl, T. E., Forde, R. and Wyller, T. B. 2008. ‘We're just sick people, nothing else’: factors contributing to elderly stroke patients’ satisfaction with rehabilitation. Clinical Rehabilitation, 22, 9, 825–35.CrossRefGoogle ScholarPubMed
Marques, S., Rodrigues, R. A. P. and Kusumota, L. 2006. Cerebrovascular accident in the aged: changes in family relations. Revista Latino-americana de Enfermagem, 14, 3, 364–71.CrossRefGoogle ScholarPubMed
Martins, J. C. A. 2009. Patient's satisfaction with information on disease and morbidity. Revista Latino-americana de Enfermagem, 17, 3, 335–40.CrossRefGoogle ScholarPubMed
Ministry of Health 2013. Chinese Health Statistical Digest 2013. Ministry of Health, Beijing. Available online at: http://www.nhfpc.gov.cn/htmlfiles/zwgkzt/ptjnj/year2013/index2013.html [Accessed 8 May 2015].Google Scholar
Moloczij, M., McPherson, K. M., Smith, J. F. and Kayes, N. M. 2008. Help-seeking at the time of stroke: stroke survivors’ perspectives on their decisions. Health and Social Care in the Community, 16, 5, 501–10.CrossRefGoogle ScholarPubMed
Ngo-Metzger, Q., Legedza, A. T. R. and Phillips, R. S. 2004. Asian Americans’ reports of their health care experiences: results of a national survey. Journal of General Internal Medicine, 19, 2, 111–9.CrossRefGoogle ScholarPubMed
Nolan, M. R., Grant, G. and Keady, J. 1996. Understanding Family Care: A Multidimensional Model of Caring and Coping. Open University Press, Milton Keynes, UK.Google Scholar
Oliffe, J., Thorne, S., Hislop, T. G. and Armstrong, E.-A. 2007. ‘Truth telling’ and cultural assumptions in an era of informed consent. Family & Community Health, 30, 1, 5–15.CrossRefGoogle Scholar
Olofsson, A., Andersson, S.-O. and Carlberg, B. 2005. ‘If only I manage to get home I'll get better’: interviews with stroke patients after emergency stay in hospital on their experiences and needs. Clinical Rehabilitation, 19, 4, 433–40.CrossRefGoogle ScholarPubMed
Patton, M. Q. 2002. Qualitative Research and Evaluation Methods. Third edition, Sage, Thousand Oaks, California.Google Scholar
Payne, S., Burton, C., Addington-Hall, J. and Jones, A. 2009. End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families. Palliative Medicine, 24, 2, 146–53.CrossRefGoogle Scholar
Proot, I. M., Crebolder, H. F. J. M., Huijer Abu-Saad, H., Macor, T. H. G. M. and Ter Meulen, R. H. J. 2000 a. Stroke patients’ needs and experiences regarding autonomy at discharge from nursing home. Patient Education and Counseling, 41, 3, 275–83.CrossRefGoogle ScholarPubMed
Proot, I. M., Huijer Abu-Saad, H., de Esch-Janssen, W. P., Crebolder, H. F. J. M. and Ter Meulen, R. H. J. 2000 b. Patient autonomy during rehabilitation: the experiences of stroke patients in nursing homes. International Journal of Nursing Studies, 37, 3, 267–76.CrossRefGoogle ScholarPubMed
Proot, I. M., Ter Meulen, R. H. J., Huijer Abu-Saad, H. and Crebolder, F. J. M. 2007. Supporting stroke patients’ autonomy during rehabilitation. Nursing Ethics, 14, 2, 229–41.CrossRefGoogle ScholarPubMed
Repper, J., Nolan, M., Grant, G. and Curran, M. 2008. Family Carers on the Margins: Experiences of Assessment in Mental Health. Report to the National Coordinating Centre for NHS Service Delivery and Organisation. Available online at http://www.netscc.ac.uk/hsdr/files/project/SDO_FR_08-1311-053_V01.pdf [Accessed 14 April 2013].Google Scholar
Rodwell, M. K. 1998. Social Work Constructivist Research. Garland, New York.Google Scholar
Rogers, A. and Addington-Hall, J. 2005. Care of the dying stroke patient in the acute setting. Journal of Research in Nursing, 10, 2, 153–67.CrossRefGoogle Scholar
Royal College of Physicians Intercollegiate Stroke Working Party 2012 a. National Clinical Guideline for Stroke. Royal College of Physicians, London. Available online at http://www.rcplondon.ac.uk/sites/default/files/national-clinical-guidelines-for-stroke-fourth-edition.pdf [Accessed 22 August 2013].Google Scholar
Royal College of Physicians Intercollegiate Stroke Working Party 2012 b. Care After Stroke or Transient Ischaemic Attack: Information for Patients and Their Carers. Royal College of Physicians, London. Available online at http://www.rcplondon.ac.uk/sites/default/files/documents/care_after_stroke_or_tia_booklet.pdf [Accessed 22 August 2013].Google Scholar
Ruhnke, G. W., Wilson, S. R., Akamatsu, T., Kinoue, T., Takashima, Y., Goldstein, M. K., Koenig, B. A., Hornberger, J. C. and Raffin, T. A. 2000. Ethical decision making and patient autonomy: a comparison of physicians and patients in Japan and the United States. Chest, 118, 4, 1172–82.CrossRefGoogle ScholarPubMed
Slingsby, B. T. 2006. Professional approaches to stroke treatment in Japan: a relationship-centred model. Journal of Evaluation in Clinical Practice, 12, 2, 218–26.CrossRefGoogle ScholarPubMed
Slot, K. B. and Berge, E. 2009. Thrombolytic treatment for stroke: patient preferences for treatment, information, and involvement. Journal of Stroke and Cerebrovascular Diseases, 18, 1, 17–22.CrossRefGoogle ScholarPubMed
Sneeuw, K. C. A., Aaronson, N. K., de Hann, R. J. and Limburg, M. 2007. Assessing quality of life after stroke. Stroke, 28, 8, 1541–9.CrossRefGoogle Scholar
Stacey, D., Menard, P., Gaboury, I., Jacobsen, M., Sharif, F., Ritchie, L. and Bunn, H. 2008. Decision making needs of patients with depression: a descriptive study. Journal of Psychiatric and Mental Health Nursing, 15, 4, 287–95.CrossRefGoogle ScholarPubMed
Takahashi, O., Noguchi, Y., Rahman, M., Shimbo, T., Goto, M., Matsui, K., Asaia, A., Onishi, M., Koyama, H., Sawadab, I., Yoshinakab, T. and Fukui, T. 2003. Influence of family on acceptance of influenza vaccination among Japanese patients. Family Practice, 20, 2, 162–6.CrossRefGoogle ScholarPubMed
Tang, S. T., Liu, T. W., Lai, M. S., Liu, L. N., Chen, C. H. and Koong, S. L. 2006. Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Investigation, 24, 4, 360–6.CrossRefGoogle ScholarPubMed
Tsai, D. F. C. 1999. Ancient Chinese medical ethics and the four principles of biomedical ethics. Journal of Medical Ethics, 25, 4, 315–21.CrossRefGoogle Scholar
Vincent, J. L. 1999. Forgoing life support in western European intensive care units: the results of an ethical questionnaire. Critical Care Medicine, 27, 8, 1626–33.CrossRefGoogle ScholarPubMed
Wang, Y. 2013. ‘Keeping the peace’: multiple perspectives on decision-making following acute stroke in China: a constructivist grounded theory study. PhD thesis, University of Sheffield, Sheffield, UK.Google Scholar
Wellwood, I., Dennis, M. S. and Warlow, C. P. 1994. Perceptions and knowledge of stroke among surviving patients with stroke and their carers. Age and Ageing, 23, 4, 293–8.CrossRefGoogle ScholarPubMed
Weng, L., Joynt, G. M., Lee, A., Du, B., Leung, P., Peng, J., Gomersall, C. D., Hu, X., Yap, H. Y. and The Chinese Critical Care Ethics Group 2011. Attitudes towards ethical problems in critical care medicine: the Chinese perspective. Intensive Care Medicine, 37, 4, 655–64.CrossRefGoogle ScholarPubMed
Wiles, R., Pain, H., Buckland, S. and McLellan, L. 1998. Providing appropriate information to patients and carers following stroke. Journal of Advanced Nursing, 28, 4, 794–801.CrossRefGoogle Scholar
Yap, H. Y., Joynt, G. M. and Gomersall, C. D. 2004. Ethical attitudes of intensive care physicians in Hong Kong: questionnaire survey. Hong Kong Medical Journal, 10, 4, 244–50.Google Scholar
Yun, Y. H., Lee, C. G., Kim, S. Y., Lee, S. W., Heo, D. S., Kim, J. S., Lee, K. S., Hong, Y. S., Lee, J. S. and You, C. H. 2004. The attitudes of cancer patients and their families toward the disclosure of terminal illness. Journal of Clinical Oncology, 22, 2, 307–14.CrossRefGoogle ScholarPubMed