Personal Tragedy or System Failure: A Qualitative Analysis of Narratives of Caregivers of People with Severe Mental Illness in Hong Kong and Taiwan

Background: Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained. Material: In-depth interviews were co...

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Published in	International journal of social psychiatry Vol. 52; no. 5; pp. 413 - 423
Main Authors	Chiu, Marcus Yu-Lung, Wei, Grace Fang-Wan, Lee, Sing
Format	Journal Article
Language	English
Published	London, England SAGE Publications 01.09.2006 Sage
Subjects	Adult Aged Attitude Biological and medical sciences Caregivers Carers Caring Counselling Delivery Systems Empowerment Family environment. Family history Family Policy Family Roles Family Therapy Female Hong Kong Humans Interviews as Topic Male Medical sciences Medically Underserved Area Mental Disorders Mental health Mental health care Mental Health Services - standards Mental illness Mentally ill people Middle Aged Narratives Needs assessment Nuclear Family Patient satisfaction Psychology Psychology. Psychoanalysis. Psychiatry Psychopathology. Psychiatry Qualitative analysis Qualitative methods Social psychiatry Social psychiatry. Ethnopsychiatry Taiwan Hong Kong Asia China Taiwan Social environment Human Health system Caregiver Mental health Caregiver burden Personal experience Health staff family relation Language Narrative Family environment Mental disorder Qualitative analysis Public health
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ISSN	0020-7640 1741-2854
DOI	10.1177/0020764006065155

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Abstract	Background: Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained. Material: In-depth interviews were conducted with 11 caregivers in Hong Kong and Taiwan and subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame and lay explanation, inertia of caregivers and non-responsive service system, and unsatisfying encounters with medical staff. Discussion: The results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy and misfortune at personal and family levels. Such a discourse is closely connected to a wider context of health and social care. The Hong Kong subjects complained more, felt more helpless, and had more persistent self-blame and lay explanation than the Taiwanese subjects. Conclusions: To reduce such experiences, this paper calls for inclusive policies for the family, new education strategies and reflections on the roles of mental health professionals in empowerment and advocacy beyond conventional treatment, counseling and education.
AbstractList	Background: Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained. Material: In-depth interviews were conducted with 11 caregivers in Hong Kong and Taiwan and subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame and lay explanation, inertia of caregivers and non-responsive service system, and unsatisfying encounters with medical staff. Discussion: The results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy and misfortune at personal and family levels. Such a discourse is closely connected to a wider context of health and social care. The Hong Kong subjects complained more, felt more helpless, and had more persistent self-blame and lay explanation than the Taiwanese subjects. Conclusions: To reduce such experiences, this paper calls for inclusive policies for the family, new education strategies and reflections on the roles of mental health professionals in empowerment and advocacy beyond conventional treatment, counseling and education. Background: Most studies agree that mental illness brings a heavy objective & subjective burden of care on the family & especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped & sustained. Material: In-depth interviews were conducted with 11 caregivers in Hong Kong & Taiwan & subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame & lay explanation, inertia of caregivers & non-responsive service system, & unsatisfying encounters with medical staff. Discussion: The results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy & misfortune at personal & family levels. Such a discourse is closely connected to a wider context of health & social care. The Hong Kong subjects complained more, felt more helpless, & had more persistent self-blame & lay explanation than the Taiwanese subjects. Conclusions: To reduce such experiences, this paper calls for inclusive policies for the family, new education strategies & reflections on the roles of mental health professionals in empowerment & advocacy beyond conventional treatment, counseling & education. Tables, References. [Reprinted by permission of Sage Publications Ltd., copyright 2006.] Background: Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained. Material: In-depth interviews were conducted with 11 caregivers in Hong Kong and Taiwan and subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame and lay explanation, inertia of caregivers and non-responsive service system, and unsatisfying encounters with medical staff. Discussion: The results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy and misfortune at personal and family levels. Such a discourse is closely connected to a wider context of health and social care. The Hong Kong `ubjects complained more, felt more helpless, and had more persistent self-blame and lay explanation than the Taiwanese subjects. Conclusions: To reduce such experiences, this paper calls for inclusive policies for the family, new education strategies and reflections on the roles of mental health professionals in empowerment and advocacy beyond conventional treatment, counseling and education. Reprinted by permission of Sage Publications Ltd. Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained.BACKGROUNDMost studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained.In-depth interviews were conducted with 11 caregivers in Hong Kong and Taiwan and subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame and lay explanation, inertia of caregivers and non-responsive service system, and unsatisfying encounters with medical staff.MATERIALIn-depth interviews were conducted with 11 caregivers in Hong Kong and Taiwan and subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame and lay explanation, inertia of caregivers and non-responsive service system, and unsatisfying encounters with medical staff.The results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy and misfortune at personal and family levels. Such a discourse is closely connected to a wider context of health and social care. The Hong Kong subjects complained more, felt more helpless, and had more persistent self-blame and lay explanation than the Taiwanese subjects.DISCUSSIONThe results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy and misfortune at personal and family levels. Such a discourse is closely connected to a wider context of health and social care. The Hong Kong subjects complained more, felt more helpless, and had more persistent self-blame and lay explanation than the Taiwanese subjects.To reduce such experiences, this paper calls for inclusive policies for the family, new education strategies and reflections on the roles of mental health professionals in empowerment and advocacy beyond conventional treatment, counseling and education.CONCLUSIONSTo reduce such experiences, this paper calls for inclusive policies for the family, new education strategies and reflections on the roles of mental health professionals in empowerment and advocacy beyond conventional treatment, counseling and education. Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained. In-depth interviews were conducted with 11 caregivers in Hong Kong and Taiwan and subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame and lay explanation, inertia of caregivers and non-responsive service system, and unsatisfying encounters with medical staff. The results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy and misfortune at personal and family levels. Such a discourse is closely connected to a wider context of health and social care. The Hong Kong subjects complained more, felt more helpless, and had more persistent self-blame and lay explanation than the Taiwanese subjects. To reduce such experiences, this paper calls for inclusive policies for the family, new education strategies and reflections on the roles of mental health professionals in empowerment and advocacy beyond conventional treatment, counseling and education.
Author	Wei, Grace Fang-Wan Chiu, Marcus Yu-Lung Lee, Sing
Author_xml	– sequence: 1 givenname: Marcus Yu-Lung surname: Chiu fullname: Chiu, Marcus Yu-Lung organization: Department of Social Work, Hong Kong Baptist University, Kowloon, Hong Kong – sequence: 2 givenname: Grace Fang-Wan surname: Wei fullname: Wei, Grace Fang-Wan organization: Department of Social Work, National Taipei University, Taiwan – sequence: 3 givenname: Sing surname: Lee fullname: Lee, Sing organization: Department of Psychiatry, Chinese University of Hong Kong
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Snippet	Background: Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However,... Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little... Background: Most studies agree that mental illness brings a heavy objective & subjective burden of care on the family & especially the caregivers. However,...
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SubjectTerms	Adult Aged Attitude Biological and medical sciences Caregivers Carers Caring Counselling Delivery Systems Empowerment Family environment. Family history Family Policy Family Roles Family Therapy Female Hong Kong Humans Interviews as Topic Male Medical sciences Medically Underserved Area Mental Disorders Mental health Mental health care Mental Health Services - standards Mental illness Mentally ill people Middle Aged Narratives Needs assessment Nuclear Family Patient satisfaction Psychology Psychology. Psychoanalysis. Psychiatry Psychopathology. Psychiatry Qualitative analysis Qualitative methods Social psychiatry Social psychiatry. Ethnopsychiatry Taiwan
Title	Personal Tragedy or System Failure: A Qualitative Analysis of Narratives of Caregivers of People with Severe Mental Illness in Hong Kong and Taiwan
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