Skip to main content
Intended for healthcare professionals
Restricted access
Research article
First published online November 19, 2015

Partnership: The Missing Link in the Process of De-Institutionalization of Mental Health Care

Abstract

This study discusses the main barriers to partnership between family and health services in the context of schizophrenia and de-institutionalization (reduction of the length of hospitalization whenever possible and returning the patient to the community) addressed to deal with the increasing costs and demand for health care services. Thus, in de-institutionalization the burden of care is not resolved but shared with the family, under the assumption that the patient has someone—a family caregiver—who can take up the responsibility of care at home. Despite the high burden of care faced by the family caregiver in mental illness, the necessary systematic partnership between the medical team and the family caregiver is missing. Subjects were 47 family caregivers of persons living with schizophrenia. Data were collected using in-depth interviews, structured questionnaires and attitudinal scales. Data analysis included factor analysis and odds ratios. Two types of barriers to partnership are identified in the literature: health services barriers and barriers attributed to the family. The findings confirm the health services barriers but reject the assumed family barriers.

Get full access to this article

View all access and purchase options for this article.

References

1. Panayiotopoulos C, Pavlakis A, Apostolou M. Family burden of schizophrenic patients and the welfare system; the case of Cyprus. Int J Ment Health Syst 2013; 7(13): 1–9.
2. Baronet AM. Factors associated with caregiver burden in mental illness: a critical review of the research literature. Clin Psychol Rev 1999; 19(7): 819–841.
3. Grandón P, Jenaro C, Lemos S. Primary caregivers of schizophrenia outpatients: burden and predictor variables. Psychiatry Res 2008; 158(3): 335–343.
4. Quah SR. Caring for persons with schizophrenia at home: examining the link between family caregivers’ role distress and quality of life. Sociol Health Ill 2014; 36(4): 596–612.
5. Coleman JS. Foundations of Social Theory, Cambridge, MA: Harvard University Press, 1990.
6. Lin N. Building a network theory of social capital. Connections 1999; 22(1): 28–51.
7. Pescosolido B. Beyond rational choice: the social dynamics of how people seek help. Am J Sociol 1992; 97(4): 1096–1138.
8. Boss P. Family Stress Management. A Contextual Approach, London, England: Sage, 2002.
9. Perry BL, Pescosolido B. Social network activation: the role of health discussion partners in recovery from mental illness. Soc Sci Med 2015; 125: 116–128.
10. Welch JR To improve, health care must partner with patients and families. In: National Academies Institute of Medicine (ed). Partnering with Patients to Drive Shared Decisions, Better Value, and Care improvement, Washington, DC: National Academies Press, 2013, pp. 7–18.
11. Song L, Lin N. Social capital and health inequality: evidence from Taiwan. J Health Soc Behav 2009; 50(2): 149–163.
12. AARP (American Association of Retired Persons). Home Alone: Family Caregivers Providing Complex Chronic Care, Washington, DC: AARP, 2012.
13. Nasrallah HA, Smeltzer DJ. Contemporary Diagnosis and Management of the Patient with Schizophrenia, Longboat Key, FL: Handbooks in Health Care, 2003.
14. Haycock DA. The Health Guide to Schizophrenia, Avon, MA: AdamsMedia, 2009.
15. Glynn SM, Cohen AN, Dixon LB, et al. The potential impact of the recovery movement on family interventions for schizophrenia: opportunities and obstacles. Schizophr Bull 2006; 32(3): 451–463.
16. Burton N, Davison P. Living with Schizophrenia, London, England: Sheldon Press, 2007.
17. AIC (Agency for Integrated Care). Caregiver Basics 101. A Resource Guide for New Caregivers, Singapore: AIC, 2012.
18. Levine C, Feinberg L. Transitions in care: are they patient- and family-centered? Generation 2013; 36(4): 20–271.
19. Gibson MI, Kelly K, Kaplan AK. Family Caregiving and Transitional Care: A Critical Review, Washington, DC: FCA-NCC, 2012.
20. Hilts L, Howard M, Price D, et al. Helping primary care teams emerge through a quality improvement program. Fam Pract 2013; 30(2): 204–211.
21. Farrell B, Ward N, Dore N, et al. Working in interprofessional primary health treatment teams: what do pharmacists do? Res Soc Adm Pharm 2013; 9: 288–301.
22. Rosser WW, Colwill JM, Kasperski J, et al. Progress of Ontario’s family health team model: a patient-centered medical home. Ann Fam Med 2011; 9(2): 165–171.
23. Funk L, Stajduhar K. Analysis and proposed model of family caregivers’ relationships with home health providers and perceptions of the quality of formal services. J Appl Gerontol 2011; 32(2): 188–206.
24. Heinrichs RW. Schizophrenia and the brain: conditions for neuropsychology of madness. Am Psychol 1993; 48(3): 221–233.
25. Barak Y, Bleich A, Aizenberg D. Psychological remission in schizophrenia: developing a clinician-rated scale. Compr Psychiatry 2010; 51(1): 94–98.
57. Wolff JL. Family matters in health care delivery. JAMA 2012; 308(15): 1529–1530.
26. Briggle A, Mitcham C. Ethics and Science. An Introduction, Cambridge, England: Cambridge University Press, 2012.
27. Pence GE. Classic Cases in Medical Ethics, Boston, MA: McGraw Hill, 2004.
28. Drapalski AL, Marshall T, Seybolt D, et al. Unmet needs of families of adults with mental illness and preferences regarding family services. Psychiatr Serv 2008; 59(6): 655–662.
29. Fan SLS, Sathick I, McKitty K, et al. Quality of life of family caregivers and patients on peritoneal dialysis. Nephrol Dial Transplant 2008; 23(5): 1713–1719.
30. McGuire R, McCabe R, Priebe S. Theoretical frameworks for understanding and investigating the therapeutic relationship in psychiatry. Soc Psychiatry Psychiatr Epidemiol 2001; 36(11): 557–564.
31. Wolff JL, Roter DL. Older adults’ mental health function and patient-centered care: does the presence of a family companion help or hinder communication? J Gen Intern Med 2012; 27(6): 661–668.
32. Cohen AN, Glynn SM, Hamilton AB, et al. Implementation of a family intervention for individuals with schizophrenia. J Gen Intern Med 2010; 25(Suppl 1): 32–37.
33. Perlick DA, Rosenheck RA, Miklowitz DJ, et al. Caregiver burden and health in bipolar disorder. A cluster analytic approach. J Nerv Ment Dis 2008; 196(6): 484–491.
34. Wearden AJ, Tarrier N, Barrowclough C, et al. A review of expressed emotion research in health care. Clin Psychol Rev 2000; 20(5): 633–666.
35. Cechnicki A, Bielańska A, Hanuszkiewicz I, et al. The predictive validity of Expressed Emotions (EE) in schizophrenia. A 20-year prospective study. J Psychiatr Res 2013; 47(2): 208–214.
36. Banerjee AG, Retamero C. Expressed emotion – a determinant of relapse in schizophrenia: a case report and literature review. J Psychiatry Brain Funct 2014; 1(1): 4. doi: 10.7243/2055-3447-1-4.
37. Alvarez-Jimenez M, Priede A, Hetrick SE, et al. Risk factors for relapse following treatment for first episode of psychosis: a systematic review and meta-analysis of longitudinal studies. Schizophr Res 2012; 139(1–3): 116–128.
38. Berry K, Barrowclough C, Haddock G. The role of expressed emotion in relationships between psychiatric staff and people with a diagnosis of psychosis: a review of the literature. Schizophr Bull 2011; 37(5): 958–972.
39. Singh SP, Harley K, Suhail K. Cultural specificity of emotional overinvolvement: a systematic review. Schizophr Bull 2011; 39(2): 449–463.
40. Quah SR Illness and caregiving in the family. In: Quah SR (ed). Routledge Handbook of Families in Asia, London, England: Routledge, 2015, pp. 359–374.
41. Cherlin AJ. Public & Private Families. An Introduction, Boston, MA: McGraw Hill, 2013.
44. White JM, Klein DM. Family Theories, London, England: Sage, 2008.
45. Agar S, Moniz-Cook E, Orbell S, et al. Measuring the outcome of psychosocial intervention for family caregivers of dementia sufferers: a factor analytic study. Aging Ment Health 1997; 1(2): 166–175.
46. Chien WT, Chan SWC. One-year follow-up of a multiple-family-group intervention for Chinese families of patients with schizophrenia. Psychiatr Serv 2004; 55(11): 1276–1284.
47. Chou KR, Liu SY, Chu H. The effects of support groups on caregivers of patients with schizophrenia. Int J Nurs Stud 2001; 39: 713–722.
56. Compton MT, Esterberg ML, McGee R, et al. Crisis intervention team training: changes in knowledge, attitudes, and stigma related to schizophrenia. Psych Serv 2006; 57(8): 1199–1202.
50. Vogt WP. Quantitative Research Methods for Professionals, Boston, MA: Pearson, 2007.
51. Sistrom CL, Garvan CW. Proportions, odds and risk. Radiology 2004; 230(1): 12–19.
48. MSF-Ministry of Social and Family Development. Singapore Social Statistics in Brief, Singapore: MSF, 2013.
52. Sutterland AL, Dieleman J, Storosum JG, et al. Annual incidence rate of schizophrenia and schizophrenia spectrum disorders in a longitudinal population-based cohort study. Soc Psychiatry Psychiatr Epidemiol 2013; 48(9): 1357–1365.
42. Quah SR. Ethnicity and parenting styles among Singapore families. Marriage Fam Rev 2003; 35(1): 63–83.
43. Häfner H, Maurer K, Heiden WAD. ABC Schizophrenia study: an overview of results since 1996. Soc Psychiatry Psychiatr Epidemiol 2013; 48(7): 1021–1031.
53. Fan CC, Chen YY. Factors associated with care burden and quality of life among caregivers of the mentally ill in Chinese society. Int J Soc Psychiatry 2011; 57(2): 195–206.

Biographies

Stella R. Quah, MSc, PhD, is Consultant and Adjunct Professor, Duke-NUS Graduate Medical School Singapore. Among her latest publications are: Routledge Handbook of Families in Asia, 2015;” Public Health and Epidemiology: Prevention and surveillance of health risks,” Elsevier Reference Module in Biomedical Sciences, 2015: 1–7; “Sociology and psychology in public health,” Oxford Textbook of Global Public Health, 2015, 2:695–708; “Caring for persons with schizophrenia at home: Examining the link between family caregivers’ role distress and quality of life,” Sociology of Health & Illness, 2014, 36, 4: 596–612; and “Gender and the burden of disease in ten Asian countries: An exploratory analysis,” Asia Europe Journal, 2011, 8: 499–512. The complete list of her publications is provided at http://www.stellarquah.com/

Cite article

Cite article

Cite article

OR

Download to reference manager

If you have citation software installed, you can download article citation data to the citation manager of your choice

Share options

Share

Share this article

Share with email
EMAIL ARTICLE LINK
Share on social media

Share access to this article

Sharing links are not relevant where the article is open access and not available if you do not have a subscription.

For more information view the Sage Journals article sharing page.

Information, rights and permissions

Information

Published In

Article first published online: November 19, 2015
Issue published: July 2017

Keywords

  1. de-institutionalization
  2. family caregivers
  3. schizophrenia
  4. burden of care

Rights and permissions

© The Author(s) 2015.
Request permissions for this article.
PubMed: 26588941

Authors

Affiliations

Stella R. Quah
Duke-NUS Graduate Medical School, Singapore

Notes

1
Stella R. Quah, Health Services and Systems Research Program, Duke-NUS Graduate Medical School, 8 College Road, 169857, Singapore. Email: [email protected]

Metrics and citations

Metrics

Journals metrics

This article was published in International Journal of Social Determinants of Health and Health Services.

VIEW ALL JOURNAL METRICS

Article usage*

Total views and downloads: 1265

*Article usage tracking started in December 2016


Articles citing this one

Receive email alerts when this article is cited

Web of Science: 3 view articles Opens in new tab

Crossref: 3

  1. Voices to be heard: Understanding family perspectives in forensic care...
    Go to citation Crossref Google Scholar
  2. Healthcare professionals’ perceptions of the implementation of the tra...
    Go to citation Crossref Google Scholar
  3. Family Support Groups for Family Members of Mentally Ill Offenders: Fa...
    Go to citation Crossref Google ScholarPub Med

Figures and tables

Figures & Media

Tables

View Options

Get access

Access options

If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below:


Alternatively, view purchase options below:

Purchase 24 hour online access to view and download content.

Access journal content via a DeepDyve subscription or find out more about this option.

View options

PDF/ePub

View PDF/ePub

Full Text

View Full Text