Caregivers’ experiences and perspectives of factors associated with relapse in Iranian people living with schizophrenia: A qualitative study

Abstract

Background: Relapse in People Living with Schizophrenia (PLS) has several reasons and recognizing these can increase the effectiveness of treatment interventions. Formal and informal caregivers are an informed source to reduce relapse in PLS. Aim: This study explores the caregivers’ perspective in Iran on the factors affecting relapse in PLS. Method: A total of 28 caregivers (16 formal caregivers and 12 informal caregivers) of PLS were enrolled in our qualitative study. A content analysis was conducted using individual and group, semi-structured in-depth interviews with informal and formal caregivers of PLS. This study was conducted in a hospital, three universities, and a non-governmental organization in Tehran, Iran. Results: The majority (69%) of the participants were females. About half of the informal caregivers were over 60 years old and about 40% of the formal caregivers were in the age range of 30 to 40 years. The average number of years of work for informal caregivers was 17.6 years and the average of work experience among the formal caregivers was 14.1 years. Seven key dual themes were identified from data: ‘awareness-stigma’, ‘social support-social exclusion’, ‘treatment adherence-treatment discontinuation’, ‘holistic approach – one-dimensional approach’, ‘supported employment-social dysfunction’, ‘emotional management in family – family with high emotional expression’, and ‘access to treatment-treatment gap’. Conclusion: The results of this research can help practitioners and policymakers to enable evidence-based practices to reduce relapse in PLS by emphasizing and acting on factors identified in our analyses.

Mental Health System Responsiveness during COVID-19 in People with Pre-Existing Psychiatric Disorders: Experiences from Iran

“…The mental health system in Iran is limited to psychiatric hospitals and psychiatric beds in general hospitals. In the last decade, projects such as the integration of the mental health system in primary health care, the establishment of comprehensive mental health centers in metropolitan areas, and the provision of home visit services and follow-up after discharge have been implemented in a limited and regional manner, but they did not expand due to a lack of structural and budgetary support [ 31 , 32 ]. People with psychiatric disorders are now forgotten after discharge from the hospital until the next relapse occurs.…”

“…Another factor that seems to be effective in MHSR is insurance coverage. Although in the last decade, the Iranian Ministry of Health and Medical Education has tried to provide primary insurance coverage to the public through Iranian Health Insurance, insurance coverage for mental health services does not meet the needs of patients [ 32 , 35 ]. Various insurances cover between 90 and 97% of the costs of hospitalization in a public psychiatric hospital, but only cover 56 days of hospitalization per year and do not cover other psychiatric services such as monthly visits, medications, and rehabilitation services [ 36 ].…”

The design and process of a family and community-based intervention for relapse prevention in people living with schizophrenia in Iran

“…For this purpose, a model should be designed to consider how risk factors affect relapse and the intervention should be based on reducing risk factors and strengthening protective factors. Previous studies have suggested the factors influencing relapse in different ecological layers (Ahmad et al, 2017; Izon et al, 2018; Kazadi et al, 2008; San et al, 2013; Xiao et al, 2015; Zabihi Poursaadati et al, 2021; Zhou et al, 2017). Risk factors for relapse include poor communication skills (Wu et al, 2017), cognitive deficits (Trapp et al, 2013), negative attitudes toward illness and treatment (Moritz et al, 2014), high expressed emotion in the family (Izon et al, 2018; Maarefvand et al, 2017), lack of effective and trained caregivers (Gurak & Weisman de Mamani, 2016), negative family attitudes toward the illness and treatment (Brain et al, 2018; Zabihi Poursaadati et al, 2021), social exclusion (Reddy et al, 2019), stigma (Corrigan et al, 2012; Couture & Penn, 2003; Price et al, 2016), poor insurance coverage (Fortney et al, 2009; Mansouri et al, 2013; Price et al, 2016), lack of access to professional care (Keynejad et al, 2018; Lund et al, 2012), and weak policies in mental health (Abdulmalik et al, 2013; Rebello et al, 2014).…”

“…While interpreting the findings of this study some limitations have to be kept in mind. First, the results of our study are constrained due to all limitations inherent to qualitative study designs (Maarefvand et al, 2017; Zabihi Poursaadati et al, 2021). Second, our study did not include community members and family members of PLS.…”

“…To prevent and manage relapse, various interventions have been designed and their effectiveness has been studied, including biopharmaceutical therapies such as second-generation psychotic drugs (Aigbogun et al, 2018; Højlund et al, 2021), maintenance electroconvulsive therapy (Sanghani et al, 2018; Ward et al, 2018), psychological interventions such as acceptance and commitment therapy (Bach et al, 2013; Butler et al, 2016; Shawyer et al, 2017), cognitive-behavioral therapy (Burns et al, 2014; Rathod et al, 2010; Turkington et al, 2006), psychosocial education for the PLS and primary caregivers (Pitschel-Walz et al, 2001; Zabihi Poursaadati et al, 2021), case management models such as assertive community treatment (Bond et al, 2001) or intensive case management (Burns et al, 2007; Dieterich et al, 2017), and psychosocial rehabilitation (Lim et al, 2017; Rouse et al, 2017; Zabihi Poursaadati et al, 2021). In general, the approach of relapse prevention interventions (RPI) in high-income countries has emphasized five major domains: psychological education, family interventions, intensive case management, cognitive rehabilitation, and life skills training.…”