Review Article| Volume 41, P317-332, December 2022

Needs, challenges, and coping strategies among primary caregivers of schizophrenia patient: A systematic review & meta-synthesis

Published:September 08, 2022DOI:


      • The increase in deinstitutionalization and community-based mental health services has increased the roles and responsibilities of primary caregiver of schizophrenia.
      • Meeting the needs and enhancing the coping strategies of the primary caregivers has the potential to alleviate the suffering of the patient and the caregiver.



      Deinstitutionalization and rising psychiatric care in society have led to an increase in the role of caregivers of persons diagnosed with schizophrenia.


      The objective of this systematic review was to identify and synthesize qualitative research findings that explored the needs, challenges, and coping strategies among the primary caregivers of a schizophrenia patient.


      The electronic databases namely PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), EMBASE, Scopus, Web of Science, ProQuest, and ClinicalKey were searched to identify relevant articles published from 2005 to October 2021. The quality of the included articles was independently appraised by two reviewers using Walsh and Downe criteria and was analysed thematically. The meta-synthesis was modelled on Lucas framework.


      The richness of information across 38 papers involving 543 participants was noteworthy. The needs of the primary caregivers were rehabilitation and vocational centre, information and education, self-help groups, augmented healthcare services, and communication and collaboration. The challenges reported were treatment expenses, bizarre beliefs, self and other directed harm and violence, therapeutic noncompliance, onerous caregiving task, crumbling family relations, misconception and discrimination, and self-stigmatization. The coping strategies adopted were problem-focused coping, emotional coping, behavioural coping, coping through social support, religious coping and cognitive reappraisal.


      The primary caregivers provide unparalleled service to the health system and for the patient. The healthcare providers need to give undue attention to the unmet needs and challenges of the caregivers, which would benefit the health system by enabling the caregivers in providing long-term care for the schizophrenic.


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        • Addo R.
        • Agyemang S.A.
        • Tozan Y.
        • Nonvignon J.
        Economic burden of caregiving for persons with severe mental illness in sub-Saharan Africa: A systematic review.
        PLoS ONE. 2018; 13
        • Akbari M.
        • Alavi M.
        • Maghsoudi J.
        • Irajpour A.
        • Lopez V.
        • Cleary M.
        Mastering the art of collaboration: Supporting family caregivers of mental health patients by service providers in Iran.
        Administration and Policy in Mental Health. 2019; 46: 54-61
        • Amagai M.
        • Amagai F.
        Qualitative study of resilience of family caregivers for patients with schizophrenia in Japan.
        Mental Health in Family Medicine. 2016; 12: 307-312
        • Arun R.
        • Inbakamal S.
        • Tharyan A.
        • Premkumar P.
        Spousal caregiver burden and its relation with disability in schizophrenia.
        Indian Journal of Psychological Medicine. 2018; 40: 22
        • Attepe Özden S.
        • Tuncay T.
        The experiences of turkish families caring for individuals with schizophrenia: A qualitative inquiry.
        The International Journal of Social Psychiatry. 2018; 64: 497-505
        • Bademli K.
        • Lök N.
        Feelings, thoughts and experiences of caregivers of patients with schizophrenia.
        International Journal of Social Psychiatry. 2020; 66: 452-459
        • Bai X.L.
        • Luo Z.C.
        • Wang A.
        • Guan Z.Y.
        • Zhong Z.Y.
        • Sun M.
        • Tang S.Y.
        Challenge of parents caring for children or adolescents with early-stage schizophrenia in China: A qualitative study.
        Perspectives in Psychiatric Care. 2020; 56: 777-784
        • Barnable A.
        • Gaudine A.
        • Bennett L.
        • Meadus R.
        Having a sibling with schizophrenia: A phenomenological study.
        Research and Theory for Nursing Practice. 2006; 20: 247-264
        • Caqueo-Urízar A.
        • Alessandrini M.
        • Urzúa A.
        • Zendjidjian X.
        • Boyer L.
        • Williams D.R.
        Caregiver's quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia.
        Health and Quality of Life Outcomes. 2017; 15: 1-9
        • Chang K.J.
        • Huang X.Y.
        • Cheng J.F.
        • Chien C.H.
        The chronic sorrow experiences of caregivers of clients with schizophrenia in Taiwan: A phenomenological study.
        Perspectives in Psychiatric Care. 2018; 54: 281-286
      1. Chapter 21: Qualitative evidence | Cochrane Training, n.d.Chapter 21: Qualitative evidence | Cochrane Training. (n.d.). Retrieved May 19, 2021, from

        • Chen L.
        • Zhao Y.
        • Tang J.
        • Jin G.
        • Liu Y.
        • Zhao X.
        • Chen C.
        • Lu X.
        The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: A qualitative study.
        BMC Psychiatry. 2019; 19: 1-10
        • Cohen A.
        • Raja S.
        • Underhill C.
        • Yaro B.P.
        • Dokurugu A.Y.
        • De Silva M.
        • Patel V.
        Sitting with others: Mental health self-help groups in northern Ghana.
        International Journal of Mental Health Systems. 2012; 6: 1-8
        • Dalton-Locke C.
        • Marston L.
        • McPherson P.
        • Killaspy H.
        The effectiveness of mental health rehabilitation services: A systematic review and narrative synthesis.
        Frontiers in Psychiatry. 2021; 11
        • Dangdomyouth P.
        • Stern P.N.
        • Oumtanee A.
        • Yunibhand J.
        Tactful Monitoring: How Thai Caregivers Manage Their Relative With Schizophrenia at Home. 29. 2009: 37-50 (1)
        • Di Lorenzo R.
        • Girone A.
        • Panzera N.
        • Fiore G.
        • Pinelli M.
        • Venturi G.
        • Magarini F.
        • Ferri P.
        Empathy and perceived burden in caregivers of patients with schizophrenia spectrum disorders.
        BMC Health Services Research. 2021; 21: 1-13
        • Dobber J.
        • Latour C.
        • de Haan L.
        • Scholte op Reimer W.
        • Peters R.
        • Barkhof E.
        • van Meijel B.
        Medication adherence in patients with schizophrenia: A qualitative study of the patient process in motivational interviewing.
        BMC Psychiatry. 2018; 18: 1-10
        • Fernandes J.B.
        • Fernandes S.B.
        • Almeida A.S.
        • Cunningham R.C.
        Barriers to family resilience in caregivers of people who have schizophrenia.
        Journal of Nursing Scholarship. 2021; 53: 393
        • Fitryasari R.
        • Yusuf A.
        • Nursalam
        • Tristiana R.D.
        • Nihayati H.E.
        Family members’ perspective of family Resilience’s risk factors in taking care of schizophrenia patients.
        International Journal of Nursing Sciences. 2018; 5: 255-261
        • Gater A.
        • Rofail D.
        • Tolley C.
        • Marshall C.
        • Abetz-Webb L.
        • Zarit S.H.
        • Berardo C.G.
        “Sometimes It’s difficult to have a Normal Life”: Results from a qualitative study exploring caregiver burden in schizophrenia.
        Schizophrenia Research and Treatment. 2014; 2014: 1-13
        • Geriani D.
        • Savithry K.S.B.
        • Shivakumar S.
        • Kanchan T.
        Burden of care on caregivers of schizophrenia patients: A correlation to personality and coping.
        Journal of Clinical and Diagnostic Research : JCDR. 2015; 9: VC01
        • Gloria O.
        • Osafo J.
        • Goldmann E.
        • Parikh N.S.
        • Nonvignon J.
        • Kretchy I.M.A.
        The experiences of providing caregiving for patients with schizophrenia in the Ghanaian context.
        Archives of Psychiatric Nursing. 2018; 32: 815-822
        • Gulliver A.
        • Griffiths K.M.
        • Christensen H.
        Perceived barriers and facilitators to mental health help-seeking in young people: A systematic review.
        BMC Psychiatry. 2010; 10: 113
        • Hook K.
        • Bogdanov S.
        Mental health care in Eastern Europe and Central Asia: An analysis of needs and a call for greater investment.
        The Lancet Regional Health - Europe. 2021; 10100182
        • Hsiao C.Y.
        • Tsai Y.F.
        Factors of caregiver burden and family functioning among taiwanese family caregivers living with schizophrenia.
        Journal of Clinical Nursing. 2015; 24: 1546-1556
        • Huang X.Y.
        • Hung B.J.
        • Sun F.K.
        • Lin J.D.
        • Chen C.C.
        The experiences of carers in taiwanese culture who have long-term schizophrenia in their families: A phenomenological study.
        Journal of Psychiatric and Mental Health Nursing. 2009; 16: 874-883
        • Huang X.Y.
        • Sun F.K.
        • Yen W.J.
        • Fu C.M.
        The coping experiences of carers who live with someone who has schizophrenia.
        Journal of Clinical Nursing. 2008; 17: 817-826
        • Imkome E.U.
        • Waraassawapati K.
        Perspectives and experiences of primary caregivers of individuals with schizophrenia in Thailand.
        Issues in Mental Health Nursing. 2018; 39: 858-864
        • Jagannathan A.
        • Thirthalli J.
        • Hamza A.
        • Hariprasad V.R.
        • Nagendra H.R.
        • Gangadhar B.N.
        A qualitative study on the needs of caregivers of inpatients with schizophrenia in India.
        The International Journal of Social Psychiatry. 2011; 57: 180-194
        • Landon J.
        • Pike B.
        • Diesfeld K.
        • Shepherd D.
        The experiences of parents providing support to adult children with schizophrenia.
        Int. J. Ment. Heal. Addict. 2016; 14: 385-399
        • Liu N.
        • Zhang J.G.
        Experiences of caregivers of family member with schizophrenia in China: A qualitative study.
        Perspectives in Psychiatric Care. 2020; 56: 201-212
        • Lucas P.J.
        • Baird J.
        • Arai L.
        • Law C.
        • Roberts H.M.
        Worked examples of alternative methods for the synthesis of qualitative and quantitative research in systematic reviews.
        BMC Medical Research Methodology. 2007; 7: 1-7
        • Lundahl B.
        • Moleni T.
        • Burke B.L.
        • Butters R.
        • Tollefson D.
        • Butler C.
        • Rollnick S.
        Motivational interviewing in medical care settings: A systematic review and meta-analysis of randomized controlled trials.
        Patient Education and Counseling. 2013; 93: 157-168
        • Mannerheim A.B.
        • Muhli U.H.
        • Siouta E.
        Parents’ experiences of caring responsibility for their adult child with schizophrenia.
        Schizophrenia Research and Treatment. 2016; 2016
        • Marquez J.A.
        • García J.I.R.
        Family caregivers' monitoring of medication usage: A qualitative study of Mexican-origin families with serious mental illness.
        Culture, Medicine and Psychiatry. 2011; 35: 63-82
        • Mcauliffe R.
        • O’Connor L.
        • Meagher D.
        Parents' experience of living with and caring for an adult son or daughter with schizophrenia at home in Ireland: A qualitative study.
        Journal of Psychiatric and Mental Health Nursing. 2014; 21: 145-153
        • Mhaule V.N.
        • Ntswana-Lebang M.A.
        Experiences of caregivers of individuals suffering from schizophrenia in rural areas of the Mpumalanga Province of South Africa.
        • Milliken P.J.
        • Northcott H.C.
        Redefining parental identity: Caregiving and schizophrenia.
        Qualitative Health Research. 2003; 13: 100-113
        • Mittendorfer-Rutz E.
        • Rahman S.
        • Tanskanen A.
        • Majak M.
        • Mehtälä J.
        • Hoti F.
        • Jedenius E.
        • Enkusson D.
        • Leval A.
        • Sermon J.
        • Taipale H.
        • Tiihonen J.
        Burden for parents of patients with Schizophrenia—A nationwide comparative study of parents of offspring with rheumatoid arthritis, multiple sclerosis, epilepsy, and healthy controls.
        Schizophrenia Bulletin. 2019; 45: 794-803
        • Mizuno E.
        • Iwasaki M.
        • Sakai I.
        Subjective experiences of husbands of spouses with schizophrenia: An analysis of the husbands' descriptions of their experiences.
        Archives of Psychiatric Nursing. 2011; 25: 366-375
        • Mizuno E.
        • Takataya K.
        • Kamizawa N.
        • Sakai I.
        • Yamazaki Y.
        Female families' experiences of caring for persons with schizophrenia.
        Archives of Psychiatric Nursing. 2013; 27: 72-77
        • Moher D.
        • Shamseer L.
        • Clarke M.
        • Ghersi D.
        • Liberati A.
        • Petticrew M.
        • Shekelle P.
        • Stewart L.A.
        • Estarli M.
        • Barrera E.S.A.
        • Martínez-Rodríguez R.
        • Baladia E.
        • Agüero S.D.
        • Camacho S.
        • Buhring K.
        • Herrero-López A.
        • Gil-González D.M.
        • Altman D.G.
        • Booth A.
        • Whitlock E.
        Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement.
        Revista Espanola de Nutricion Humana y Dietetica. 2016; 20: 148-160
        • Molefi S.
        • Swartz L.
        Caring for a relative with schizophrenia: Understandings.
        Challenges and the Interface with Mental Health Professionals. 2014; 21: 239-244
        • Morgan A.J.
        • Wright J.
        • Reavley N.J.
        Review of Australian initiatives to reduce stigma towards people with complex mental illness: What exists and what works?.
        International Journal of Mental Health Systems. 2021; 15: 1-51
        • Naik S.K.
        • Pattanayak S.
        • Gupta C.S.
        • Pattanayak R.D.
        Help-seeking behaviors among caregivers of schizophrenia and other psychotic patients: A hospital-based study in two geographically and culturally distinct Indian cities.
        Indian Journal of Psychological Medicine. 2012; 34: 338
        • Navidian A.
        • Kermansaravi F.
        • Rigi S.N.
        The effectiveness of a group psycho-educational program on family caregiver burden of patients with mental disorders.
        BMC Research Notes. 2012; 5: 399
        • Negota A.J.
        • Mashegoane S.
        Mothering Children With Schizophrenia in a Village Setting: A Multiple Case Study. 22. 2014: 259-262 (2)
        • Ng C.
        • Herrman H.
        • Chiu E.
        • Singh B.
        Community mental health care in the Asia-Pacific region: Using current best-practice models to inform future policy.
        World Psychiatry. 2009; 8: 49
        • Oliveira R.M.d.
        • Furegato A.R.F.
        An elderly couple and their long life raising four schizophrenic children.
        Revista Da Escola de Enfermagem Da USP. 2012; 46: 618-625
        • Olwit C.
        • Musisi S.
        • Leshabari S.
        • Sanyu I.
        Chronic sorrow: Lived experiences of caregivers of patients diagnosed with schizophrenia in Butabika Mental Hospital, Kampala, Uganda.
        Archives of Psychiatric Nursing. 2015; 29: 43-48
        • Ong H.C.
        • Ibrahim N.
        • Wahab S.
        Psychological distress, perceived stigma, and coping among caregivers of patients with schizophrenia.
        Psychology Research and Behavior Management. 2016; 9: 211
        • Outram S.
        • Harris G.
        • Kelly B.
        • Bylund C.L.
        • Cohen M.
        • Landa Y.
        • Levin T.
        • Sandhu H.
        • Vamos M.
        • Loughland C.
        “We didn't have a clue”: Family caregivers' experiences of the communication of a diagnosis of schizophrenia.
        Int. J. Soc.Psychiatry. 2015; 61: 10-16
        • Ouzzani M.
        • Hammady H.
        • Fedorowicz Z.
        • Elmagarmid A.
        Rayyan-a web and mobile app for systematic reviews.
        Systematic Reviews. 2016; 5: 1-10
        • Park M.
        • Lee K.-J.
        Korean sibling caregivers of individuals diagnosed with schizophrenia.
        Asian/Pacific Island Nurs. J. 2017; 2: 97
        • Poon W.C.
        • Joubert L.
        • Harvey C.
        Experiences of chinese migrants caring for family members with schizophrenia in Australia.
        Social Work in Health Care. 2013; 52: 144-165
        • Poonnotok P.
        • Thampanichawat W.
        • Patoomwan A.
        • Sangon S.
        Struggling to Restore Normalcy: Thai Parents’ Experiences in Being Caregivers of Children With Early Schizophrenia.
        2016 (Undefined)
        • Raghavan V.
        • Mohan G.
        • Gopal S.
        Felt needs of primary caregivers of individuals with schizophrenia: A study from South India.
        Asian Journal of Psychiatry. 2017; 29: 1-2
        • Rahmani F.
        • Ranjbar F.
        • Hosseinzadeh M.
        • Razavi S.S.
        • Dickens G.L.
        • Vahidi M.
        Coping strategies of family caregivers of patients with schizophrenia in Iran: A cross-sectional survey.
        International Journal of Nursing Sciences. 2019; 6: 148
        • Rao P.
        • Grover S.
        • Chakrabarti S.
        Coping with caregiving stress among caregivers of patients with schizophrenia.
        Asian Journal of Psychiatry. 2020; 54
        • Saunders J.
        At wits” end!": Perspectives of hispanic caregivers of a family member with schizophrenia.
        Issues in Mental Health Nursing. 2013; 34: 451-458
        • Sethabouppha H.
        • Kane C.
        Caring for the seriously mentally ill in Thailand: Buddhist family caregiving.
        Archives of Psychiatric Nursing. 2005; 19: 44-57
        • Sharif F.
        • Shaygan M.
        • Mani A.
        Effect of a psycho-educational intervention for family members on caregiver burdens and psychiatric symptoms in patients with schizophrenia in Shiraz, Iran.
        BMC Psychiatry. 2012; 12: 1-9
        • Shiraishi N.
        • Reilly J.
        Positive and negative impacts of schizophrenia on family caregivers: A systematic review and qualitative meta-summary.
        Social Psychiatry and Psychiatric Epidemiology. 2019; 54: 277-290
        • Snyder C.M.
        • Fauth E.
        • Wanzek J.
        • Piercy K.W.
        • Norton M.C.
        • Corcoran C.
        • Rabins P.V.
        • Lyketsos C.G.
        • Tschanz J.T.
        Dementia caregivers' coping strategies and their relationship to health and well-being: The Cache County study.
        Aging & Mental Health. 2015; 19: 390
        • Sreeja
        Family Caregiver Burden in Schizophrenia: A Qualitative Study. 5. 2013: 2
        • Taghva A.
        • Farsi Z.
        • Javanmard Y.
        • Atashi A.
        • Hajebi A.
        • Noorbala A.A.
        Strategies to reduce the stigma toward people with mental disorders in Iran: Stakeholders' perspectives.
        BMC Psychiatry. 2017; 17: 1-12
        • Tamizi Z.
        • Fallahi-Khoshknab M.
        • Dalvandi A.
        • Mohammadi-Shahboulaghi F.
        • Mohammadi E.
        • Bakhshi E.
        Caregiving burden in family caregivers of patients with schizophrenia: A qualitative study.
        Journal of Education and Health Promotion. 2020; 9
        • Teferra S.
        • Shibre T.
        Perceived causes of severe mental disturbance and preferred interventions by the borana semi-nomadic population in southern Ethiopia: A qualitative study.
        BMC Psychiatry. 2012; 12: 1-9
        • Tsui M.C.M.
        • Tsang H.W.H.
        Views of people with schizophrenia and their caregivers towards the needs for psychiatric rehabilitation in urban and rural areas of mainland China.
        Psychiatry Research. 2017; 258: 72-77
        • Walsh D.
        • Downe S.
        Appraising the quality of qualitative research.
        Midwifery. 2006; 22: 108-119
        • Wang D.
        • Ma J.
        • Tan L.
        • Chen Y.
        • Li X.
        • Tian X.
        • Zhou X.
        • Liu X.
        Epidemiology of severe mental illness in Hunan province in Central China during 2014–2015: A multistage cross-sectional study.
        PLoS ONE. 2017; 12
        • White C.
        • Unruh A.
        Unheard Voices: Mothers of Adult Children With Schizophrenia Speak up. 32. 2013: 109-120 (3)
        • WHO
        Mental health action plan 2013 - 2020. WHO.
        • Wiens S.E.
        • Daniluk J.C.
        Love, loss, and learning: The experiences of fathers who have children diagnosed with schizophrenia.
        Journal of Counseling & Development. 2009; 87: 339-348
        • Yang C.I.
        • Hsieh M.Y.
        • Lee L.H.
        • Chen S.L.
        Experiences of caring for a sibling with schizophrenia in a Chinese context: A neglected issue.
        International Journal of Mental Health Nursing. 2017; 26: 409-417
        • Yen W.J.
        • Teng C.H.
        • Huang X.Y.
        • Ma W.F.
        • Lee S.
        • Tseng H.C.
        A theory of meaning of caregiving for parents of mentally ill children in Taiwan, a qualitative study.
        Journal of Clinical Nursing. 2010; 19: 259-265
        • Yoshioka K.
        • Reavley N.J.
        • Rossetto A.
        • Nakane Y.
        Associations between Beliefs About the Causes of Mental Disorders and Stigmatizing Attitudes: Results of a Mental Health Literacy and Stigma Survey of the Japanese Public. 45. 2016: 183-192 (3)
        • Zou H.
        • Li Z.
        • Arthur D.
        • Wang H.
        Self-management in chinese people with schizophrenia and their caregivers: A qualitative study on facilitators and barriers.
        International Journal of Mental Health Nursing. 2014; 23: 355-363