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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2009

Open Access 01-12-2009 | Review

Quality of life in caregivers of patients with schizophrenia: A literature review

Authors: Alejandra Caqueo-Urízar, José Gutiérrez-Maldonado, Claudia Miranda-Castillo

Published in: Health and Quality of Life Outcomes | Issue 1/2009

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Abstract

Background

A couple of decades ago, hospitals or psychiatric institutions were in charge of caring for patients with schizophrenia; however, nowadays this role is performed by one or more patient's relatives. Evidence shows that informal caregivers experience negative changes in their quality of life (QOL). The aim of this study is to review the main factors associated with the QOL of caregivers of people with schizophrenia.

Methods

A search through databases from journals published last decade between 1998 and 2008 was performed. In accordance with the inclusion criteria, titles and abstracts of citations obtained from the search were examined independently by two authors and irrelevant articles discarded. The full text of those studies considered relevant by either reviewer were obtained and assessed independently. Where differences of opinion rose they were resolved by discussion. Out of the 258 references, 37 were included in the review.
Studies which assessed factors associated with caregivers of people with schizophrenia's quality of life were included and the information summarized.

Results

Evidence suggest that physical, emotional and economic distress affect negatively caregiver's QOL as a result of a number of unfulfilled needs such as, restoration of patient functioning in family and social roles, economic burden, lack of spare time, among other factors.

Conclusion

Decreased QOL may be associated with caregivers' burden, lack of social support, course of the disease and family relationships problems. In addition, in developing countries, QOL is affected by caregivers' economic burden. High quality research is needed in order to identify factors associated with QOL over time and testing the efficacy of interventions aiming to improve QOL in caregivers of patients with schizophrenia.
Appendix
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Literature
1.
Clark R, Drake R: Expenditures of time and money by families of people with severe mental illnes and subtance use disorders. Community Ment Health J 1994, 30: 145–163. 10.1007/BF02188626CrossRefPubMed
2.
Dwyer J, Lee G, Jankowski T: Reciprocity, Elder Satisfaction and Caregiver Stress and Burden: The Exchange of Aid in the Family Caregiveing Relationship. J Marriage Fam 1994, 56: 35–43. 10.2307/352699CrossRef
3.
Yarrow M, Schwart C, Murphy H, Deasy L: The psychological meaning of mental illness in the family. J Soc Issues 1955, 11: 12–24.CrossRef
4.
Kuipers L: Family burden in schizophrenia: implications for services. Soc Psychiatry Psychitr Epidemiol 1993, 28: 207–210.
5.
Martínez J, Nadal S, Beperet M, Mendióroz P, grupo Psicost: Sobrecarga de los cuidadores familiares de pacientes con esquizofrenia: factores determinantes. An Sist Sanit de Navar 2000, 23: 101–110.
6.
Dillehay R, Sandys M: Caregivers for Alzheimer's patients: what are learning from research. Int J Aging Hum Dev 1990, 30: 263–285.CrossRefPubMed
7.
Fadden G, Bebbington P, Kuipers L: The burden of care: The impact of funtional psychiatric illness on the patient's family. Br J Psychiatr 1987, 150: 285–292. 10.1192/bjp.150.3.285CrossRef
8.
Kuipers L, Leff J, Lam D: Family work for schizophrenia: a practical guide. London: Gaskell; 1992.
9.
Gutiérrez-Maldonado J, Caqueo-Urízar A, Kavanagh D: Burden of care and general health in families of patients with schizophrenia. Soc Psychiatry Psichiatr Epidemiol 2005, 40: 899–904. 10.1007/s00127-005-0963-5CrossRef
10.
World Health Organization: Report of WHOQOL Focus Group Work: WHO (MNH/PSF/93.4). 1993.
11.
Garre J, Hernández M, Lozano M, Vilalta J, Turón A, Cruz Ma, Camps G, López S: Carga y calidad de vida en cuidadores de pacientes con demencia tipo Alzheimer. Rev Neurol 2000, 31: 522–527.
12.
Aguilar M: Estudios de calidad de vida en el marco urbano de las demencias. Rev Neurol 1998, 28: 80–84. 10.1007/s001270050301
13.
Martens L, Addington J: The psychological well-being of family members of individuals with schizophrenia. Soc Psychiatry Psychitr Epidemiol 2001, 36: 128–133. 10.1111/j.1471-6712.2004.00298.xCrossRef
14.
Ivarsson AB, Sidenvall B, Carlsson M: The factor structure of the Burden Assessment Scale and the perceived burden of caregivers for individuals with severe mental disorders. Scand J Caring Sci 2004, 18: 396–401. 10.1007/s11136-005-4629-2CrossRefPubMed
15.
Caqueo-Urízar A, Gutiérrez-Maldonado J: Burden of Care in Families of Patients with Schizophrenia. Qual Life Res 2006, 15: 719–724. 10.1111/j.1545-5300.1995.00413.xCrossRefPubMed
16.
Bloch S, Szmukler G, Herrman H, Benson A, Colussa S: Counseling Caregivers of Relatives with Schizophrenia: Themes, Interventions, and Caveats. Fam Process 1995, 34: 413–425. 10.1111/j.1545-5300.1995.00413.xCrossRefPubMed
17.
Barría J: Síndrome de Burnout en Asistentes Sociales del Servicio Nacional de Menores de la Región Metropolitana. Psykhe 2003, 12: 213–226. 10.4067/S0718-22282005000100005
18.
Quintana C: El Síndrome de Burnout en Operadores y Equipos de Trabajo en Maltrato Infantil Grave. Psykhe 2005, 14: 55–68. 10.1016/S0920-9964(98)00089-9CrossRef
19.
Webb C, Pfeiffer M, Mueser K, Gladis M, Mensh E, DeGirolamo J, Levinson D: Burden and well-being of caregivers for the severely mentally ill: the role of coping style and social support. Schizophr Res 1998, 34: 169–180. 10.1016/S0924-9338(99)80720-2CrossRefPubMed
20.
Magliano L, Marasco C, Guarneri M, Malangone C, Lacrimi G, Zanus P, Maj M: A new questionnaire assessing the opinions of the relatives of patients with schizophrenia on the causes and social consequences of the disorder: reliability and validity. Eur Psychiat 1999, 14: 71–75. 10.1007/s001270050294CrossRef
21.
Ohaeri J: Caregiver burden and psychotic patient's perception of social support in Nigerian setting. Soc Psychiatry Psychitr Epidemiol 2001, 36: 86–93. 10.1007/s001270050294CrossRef
22.
Jungbauer J, Angermeyer M: Living with a Schizophrenic Patient: A Comparative Study of Burden as It Affects Parents and Spouses. Psychiatry 2002, 65: 110–123. 10.1097/00005053-200204000-00005CrossRefPubMed
23.
Wolthaus J, Dingemans P, Schene A, Linszen D, Wiersma D, Bosch R, Cahn W, Hijman R: Caregiver burden in recent - onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Ner Ment Dis 2002, 190: 241–247. 10.1176/appi.ps.57.4.521CrossRef
24.
Bradley G, Perlesz A, Nguyen A, Singh B, Riess C: Multiple-family group treatment for England and Vietnamese-speaking families living with schizophrenia. Psychiatr Serv 2006, 57: 521–530. 10.1111/j.1440-1819.2006.01556.xCrossRefPubMed
25.
Lee T, Yang Y, Chen P, Hung N, Lin S, Chang F, Cheng S: Different dimensions of social support for caregivers for patient with schizophrenia: Main effect and stress-buffering models. Psychiat Clin Neuros 2006, 60: 546–550. 10.1111/j.1365-2702.2007.01501.xCrossRef
26.
Chien W, Chan S, Morrisey J: The perceived burden among Chinese family caregivers of people with schizophrenia. J Clin Nurs 2007, 16: 1151–61. 10.2165/00019053-200826020-00005CrossRefPubMed
27.
Awad G, Voruganti L: The Burden of Schizophrenia on Caregivers. Pharmacoeconomics 2008, 26: 149–162. 10.1007/s00127-008-0337-xCrossRefPubMed
28.
Ochoa S, Vilaplana M, Haro J, Villalta-Gil V, Martínez F, Cruz M, Casacuberta P, Paniego E, Usall J, Dolz M, Autonell J: Do needs, symptoms, or disability of outpatients with Schizophrenia influence family burden? Soc. Psychiatry Psychiatr Epidemiol 2008, 43: 612–618. 10.1016/S0929-6646(08)60182-5CrossRefPubMed
29.
Yeh LL, Hwu H, Chen CH, Chen CH, Wu A: Factors related to perceived need of primary caregivers of patients with schizophrenia. J Formos Med Assoc 2008, 107: 644–652. 10.1037/0021-843X.115.1.157CrossRefPubMed
30.
Rosenfarb I, Bellack B, Aziz A: A Sociocultural Stress, Appraisal, and Coping Model of Subjective Burden and Family Attitudes Toward Patients With Schizophrenia. J Abnormal Psychol 2006, 115: 157–165. 10.1055/s-2005-866860CrossRef
31.
Schmid R, Schielein T, Spiessl H, Cording C: Burden of siblings of inpatients with schizophrenia. Psychiatr Prax 2006, 33: 177–183. 10.1007/s11136-007-9173-9CrossRefPubMed
32.
Gutiérrez-Maldonado J, Caqueo-Urízar A: Effectiveness of a psycho-educational intervention for reducing burden in Latin American families of patients with schizophrenia. Qual Life Res 2007, 16: 739–747. 10.1016/j.psychres.2006.12.013CrossRefPubMed
33.
Grandón P, Jenaro C, Lemos S: Primary caregivers of schizophrenia outpatients: Burden and predictor variables. Psychiatry Res 2008, 158: 335–343. 10.1111/j.1440-1819.2008.01791.xCrossRefPubMed
34.
Hanzawa S, Tanaka G, Inadomi H, Urata M, Ohta Y: Burden and doping strategies in mothers of patients with schizophrenia in Japan. Psychiatry Clin Neurosci 2008, 62: 256–263. 10.1111/j.1440-1819.2008.01791.xCrossRefPubMed
35.
Dyck D, Short R, Vitaliano P: Predictors of Burden and Infectious Illness in Schizophrenia Caregivers. Psychosom Med 1999, 61: 411–419.CrossRefPubMed
36.
Espina A, González P: Intervenciones familiares en la esquizofrenia. Cambios en la sintomatología y el ajuste social. Revista Salud Mental 2003, 26: 51–58.
37.
Mubarak A, Barber J: Emocional expressiveness and the quality of life of patients with schizophrenia. Soc Psychiatry Psychitr Epidemiol 2003, 38: 380–384.
38.
Fresán A, Apiquian R, Ulloa R, Loyzaga C, García-Anaya M, Gutiérrez D: Ambiente familiar y psicoeducación en el primer episodio de la esquizofrenia: Resultados preliminares. Revista Salud Mental 2001, 24: 36–40. 10.1177/00207640030493009
39.
Thara R, Kamath S, Kumar S: Women with schizophrenia and broken marriages-doubly disadvantaged? Part II: Family perspective. Int J Soc Psychiatr 2003, 49: 233–240. 10.1177/00207640030493009CrossRef
40.
Kung W: The Illness, Stigma, Cultue or Immigration? Burden on Chinese American Caregivers of Patients with Schizophrenia. Families in Society: J Contem Human Serv 2003, 84: 547–557.CrossRef
41.
Castilla A, López M, Chavarría , Sanjuán P, Canut P, Martínez M, Martínez J, Cáceres J: La carga familiar en una muestra de pacientes esquizofrénicos en tratamiento ambulatorio. Rev Asoc Esp Neuropsiq 1998, 18: 621–642. 10.1007/s001270050073
42.
Adams J, Nand V, Le Reun C, Mudge M, Crowley S, Eggleston A, Schrover R, Brown A: The impact of schizophrenia on caregivers: burden of illness and quality of life. In Proceedings of the ISPOR 2nd Asia-Pacific Conference: 5–7 March 2006; Shanghai. University of Melbourne. North Ryde NSW: Australia; 2006.
43.
Magliano L, Fadden G, Madianos M, Caldas de Almeida J, Held T, Guarneri M, Marasco C, Tosini P, Maj M: Burden on the families of patients with schizophrenia: results of the BIOMED I study. Soc Psychiatry Psychiatr Epidemiol 1998, 33: 405–412. 10.1007/s001270050073CrossRefPubMed
44.
Stanley S, Shwetha S: Integrated Psychosocial Intervention in Schizophrenia: Implications for Patients and Caregivers. Int J Psychosocial Rehabilitation 2006, 10: 113–128. 10.1176/appi.ps.58.3.378
45.
Magaña S, García J, Hernández M, Cortez R: Psychological distress among Latino family caregivers of adult with Schizophrenia: The roles of burden and stigma. Psychiatr Serv 2007, 58: 378–384. 10.1176/appi.ps.58.3.378CrossRefPubMed
46.
Wu E, Birnbaum H, Shi L, Ball , Kessler R, Moulis M, Aqqarwal J: The Economic Burden of Schizophrenia in the United States in 2002. J Clin Psychiatry 2005, 66: 1122–1129. 10.1192/bjp.bp.106.025353CrossRefPubMed
47.
Roick C, Heider D, Bebbington P, Angermeyer M, Azorin J, Brugha T, Kilian R, Johson S, Toumi M, Kornfeld A, the EuroSC Research Group: Burden on caregivers of people with schizophrenia: comparison between Germany and Britain. Br J Psychiatry 2007, 190: 333–338. 10.1007/s00127-007-0276-yCrossRefPubMed
48.
Sefasi A, Crumlish N, Samalini P, Kinsella A, O'Callaghan E, Chilale H: A little knowledge: Caregiver burden in schizophrenia in Malawi. Soc Psychiatry Psychitr Epidemiol 2008, 43: 160–164. 10.1007/s00127-008-0357-6CrossRef
49.
Wing Kay Tang V, Kau Leung S, Chiu-Wa Lam L: Clinical correlates of the caregiving experience of Chinese Caregivers of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2008, 43: 720–726. 10.1016/j.eurpsy.2003.06.004CrossRef
50.
Lauber C, Eichenberger A, Luginbühl P, Keller C, Rössler W: Determinants of burden in caregivers of patients with exacerbating schizophrenia. Eur Psychiat 2003, 18: 285–289. 10.1023/A:1015949325141CrossRef
51.
Laidlaw T, Coverdale J, Fallon I, Kydd R: Caregivers' Stresses When living together or Apart from Patients with Chronic Schizophrenia. Community Ment Health J 2002, 38: 303–310. 10.1023/A:1015949325141CrossRefPubMed
52.
Van Wijngaarden B, Schene A, Koeter M, Becker T, Knapp M, Kundsen H, Tansella M, Thornicroft G, Vázquez J, Lasalvia A, Leese M, EPSILON study group: People with Schizophrenia in Five Countries: Conceptual Similarities and Intercultural Differences in Family Caregiving. Schizophr Bull 2003, 29: 573–586. 10.1111/j.1545-5300.2003.00091.xCrossRefPubMed
53.
McDonell M: Burden in Schizophrenia caregivers: impact of family psychoeducation and awareness of patient suicidality - Families and Couple Research. Fam Process 2003, 42: 91–103. 10.1111/j.1545-5300.2003.00091.xCrossRefPubMed
Metadata
Title
Quality of life in caregivers of patients with schizophrenia: A literature review
Authors
Alejandra Caqueo-Urízar
José Gutiérrez-Maldonado
Claudia Miranda-Castillo
Publication date
01-12-2009
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2009
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-7-84

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