Schizophrenia, a serious mental illness (SMI) has an impact on both patients and their families.
The impact of caring for someone with schizophrenia has been studied, but not to a great extent. However, research suggests that the burden placed on caregivers is complex and multifaceted.
One area of great concern related to caregiver burden is that of social networks.
Stigma associated with mental illness may lead to isolation of caregivers.
This literature review focused on articles about caregiver burden in schizophrenia that were published between 2008 and 2013.
Results supported the statements of different theories reflecting the complexity of caregiver burden.
The following is a summary of Caqueo-Urízar A, Miranda-Castillo C, Giraldez SL, Maturana SL, Perez MR, Tapia FM. An updated review on burden on caregivers of schizophrenia patients. Psicothema. 2014;26(2):235-243, which was developed independently of the article authors.
Families have assumed a large role in caregiving for family members with schizophrenia following the transition from institutionalized care to community-based care.
Caregiver burden has been defined in previous studies as “a psychological state that ensues the combination of physical, emotional work, and social pressure, such as economic restrictions, that arise from taking care of the patients.”
One area of concern among caregivers of patients with schizophrenia is a negative impact on social networks due to the stigma associated with mental illness.
Three prior studies reported that between one fifth and one third of caregivers reported strained relationships with extended family due to caring for their mentally ill relative.
Several theories have been used to conceptualize caregiver burden:
Role theory states that every person is considered an actor of social relationships, and assumes certain expected behaviors based on those relationships. Schizophrenia disrupts those roles and changes expectations, causing stress.
Stress theory posits that hardships associated with a disorder produce change in the caregiver as a result of their coping strategies.
Systemic theory holds that although burden is a family phenomenon, the family must be considered in its social context.
The aim of this study was to review the literature on caregiver burden, to describe factors frequently related to caregiver burden, and discuss them in terms of the theoretical frameworks described above.
A systematic search from MEDLINE, EMBASE, reference lists of APA, EBSCO (Psychology and Behavioral Sciences Collection), CINAHL Plus with Full Text, Academic Search Complete, Fuente Académica Premier, PsycINFO & Health Source: Nursing/Academic Edition) and Cochrane databases was carried out for articles published between January 2008 and May 2013.
Key words included: schizophrenia, burden, families, relatives, caregivers, carers, impact, review, quality of life and a combination of them.
Potential studies were included if they considered a primary family caregiver and focused on caregiver’s burden related to schizophrenia. Cross-sectional, longitudinal, reviews, qualitative and case reports studies were included.
A total of 810 articles were identified, and the titles and abstracts were reviewed independently by two authors for inclusion. The full text of those studies considered relevant by either reviewer were obtained and assessed independently. Any discrepancy was solved by discussion.
A total of 42 studies with samples of different nationalities were included in the review.
Over half (64.3%) of the reviewed studies had a cross-sectional design, 21% were longitudinal studies, 12% were qualitative in nature, and 9.6% were literature reviews.
To assess caregiver’s burden, different methods and instruments were used; therefore, comparison among studies was difficult.
Caregiver sample size ranged from 10 to 286, and, it is likely that studies with small sample sizes were not sensitive enough to detect significance.
The correlations between different variables and caregiver burden included in the discussion came mainly from quantitative descriptive studies.
The authors deemed an association between any factor and caregiver burden was considered in the discussion when it was found statistically significant in the original paper (p≤0.05) and/or was present in at least 10% of the papers reviewed.
Factors Associated with Caregiver Burden
Family interventions: Evidence showed a decrease in caregiver burden associated with psychosocial interventions.
Family interventions were shown to increase the perception of social support, self-efficacy and satisfaction with treatment among caregivers.
Evidence pointed to the need for maintenance therapy following initial results.
Ethnic group and cultural aspects: Sociocultural and ethnic characteristics were found to play an important role in the perception of caregiver burden.
Recent studies reported levels of burden in Asia and Africa similar to burden previously reported in Europe and the US; however there were differences in magnitude and manifestation of the burden.
Expressed emotion (EE): This refers to an assessment of the interactions and emotional climate in families, and includes caregiver attitudes toward the patient, particularly negative ones.
High EE in caregivers was reported to induce stress in patients and was a predictor of relapse in patients with schizophrenia.
EE was also associated with high levels of burden, less support, and deterioration of caregiver health in one study.
Stress and burden: Stress experienced by caregivers was found to be directly associated with patient’s positive symptoms, as these symptoms increased feelings of discrimination from the caregiver’s social networks.
Negative symptoms, demographic factors, and time devoted to caregiving may also increase burden levels.
Caregiver stress and burden were associated with lower quality of life.
Preoccupations of the Caregiver: Preoccupations were influenced by a patient’s symptoms of restlessness and excitement.
Caregiver preoccupations included having the ability to influence and help the patient, managing patient behavior and social-vocational problems, and the future well-being of the patient.
Kind of Caregiver: Parents (mostly mothers) were the main caretakers of patients, followed by spouses and siblings. However, one Chilean study found that husbands were the primary caretakers.
Social networks/social support: Higher levels of burden were associated with lower levels of social support, while higher levels of social support were associated with better well-being among caregivers.
This is likely due to the fact that the act of caregiving separates caregivers from their social networks, and burden is related to a more limited social network.
Finances: Financial issues, both due to a patient’s reduced earning capacity and family income declines, have been reported to contribute to family burden.
Caregiver coping: Different coping styles may affect the level of mental health deterioration among caregivers, particularly emotional distress, a predictor of caregiver burden.
Caregiver burden was associated with reduced social interests, coercion, avoidance, and resignation.
Relevant studies published in languages other than English may have been missed due to the study inclusion requirement that all articles be published in English.
Although the search terms were selected to be as inclusive as possible, some relevant articles may have been omitted based on the chosen search terms.
Considering stress theory, literature indicated that caregivers experience high levels of stress because they feel overwhelmed or because caregiving occupies most of their time. Caregiver stress increased due to communication difficulties, patient symptomatology, and financial distress.
Working outside the home, generating income, and maintaining activities other than caregiving may help protect a caregiver’s mental health.
Considering systems theory, schizophrenia can be understood as an individual, familial, social, and cultural phenomenon. Caregiver’s burden is not independent of the culture in which they live.
Caregiver burden is high among those caring for patients with schizophrenia.
Caregiver burden should be viewed from a lens of stress on the caregiver and also the culture in which the family lives.
Interventions to improve and prevent caregiver burden may not only help the caregiver, but also help the patient.
This summation has been developed independently of the authors.
This study was funded by Proyecto Mayor de Investigación Científi ca y Tecnológica Universidad de Tarapacá 3730-13 and by Convenio de Desempeño UTA-MINEDUC