ABSTRACT
Background: In lower-resource settings like Tanzania, people living with schizophrenia (PWS) rely on their families for much of their social support, thus leading family members to become their main caregivers. How PWS and their families understand and implement social support can profoundly impact recovery pathways. This study examines how PWS and caregivers of PWS in Tanzania describe receiving and giving social support. We describe, from the perspectives of treatment engaged PWS and unmatched caregivers, different types of social support experienced and provided and examine any differences in the types and expectations of social support expressed by PWS versus caregivers. Methods: A total of 39 semi-structured in-depth interviews were conducted with PWS (n = 19) and caregivers (n = 20) recruited from outpatient psychiatric clinics in tertiary-level hospitals in Tanzania across two geographic regions. Thematic content analyses were based on four dimensions of social support (instrumental, emotional, informational, and appraisal). Results: Results revealed four themes: 1) Financial and basic needs support from families is common yet critical for daily living (instrumental support); 2) There were mixed experiences regarding provision and receipt of love and acceptance with desires and calls for more encouragement and moral support (emotional support); 3) Caregivers try to provide knowledge, guidance, and reminders related to illness management for PWS but acknowledge their own gaps in understanding recovery promotion and effective caregiving (informational & appraisal supports), 4) A cross-cutting issue was calls for more social support from the wider community. Conclusion: Social support is a multi-dimensional construct recognized by PWS and caregivers as critical for illness management, yet gaps remain, often due to lack of knowledge of how to bolster social support. Given the heavy reliance on families for social support in lower-resource contexts, psychiatric services can intervene with clinic-based psychoeducation for PWS and their families to improve quality of life and functioning.
ABSTRACT
BACKGROUND: There is a treatment gap for those living with severe mental illnesses in low- and middle-income countries, yet not enough is known about those who are currently accessing clinical services. A better understanding of potentially modifiable factors associated with functioning and quality of life will help inform policies and programming. AIMS: To describe the functioning and quality of life for a psychiatric treatment-engaged population living with psychotic disorders in two urban areas of Tanzania, and to explore their respective correlates. METHODS: This study analyzed cross-sectional data from 66 individuals enrolled in the Kuwezeshana Kupata Uzima (KUPAA) pilot clinical trial who had a diagnosis of schizophrenia or schizoaffective disorder, recent relapse, and who were receiving outpatient treatment. Baseline functioning (WHO Disability Assessment Schedule 2.0) and quality of life (WHO Quality of Life BREF scale) were measured. Univariable and multivariable regression analyses were conducted to determine correlates of functioning and quality of life. RESULTS: Adjusted analyses indicated that higher disability was associated with higher food insecurity, more symptomatology, more self-stigma, less instrumental support, less hope, lower self-efficacy, and/or lower levels of family functioning. Higher quality of life was associated with higher levels of self-efficacy, more hopefulness, more instrumental support, less self-stigma, and better family functioning. CONCLUSIONS: Identification of factors associated with disability and quality of life can help clinicians and policymakers, as well as consumers of mental health services, to better co-design and target psychosocial interventions to optimize their impact in low-resource settings. TRIAL REGISTRATION: Trial registration: ClinicalTrials.gov # NCT04013932, July 10, 2019.
Subject(s)
Psychotic Disorders , Quality of Life , Humans , Male , Tanzania , Psychotic Disorders/psychology , Psychotic Disorders/therapy , Female , Adult , Cross-Sectional Studies , Urban Population , Middle Aged , Schizophrenia/therapy , Young AdultABSTRACT
In the US, there is a growing number of older Latinx communities. Qualitative approaches such as narrative inquiry may be fruitful endeavors to elucidate their lived experiences. However, older Latinx communities, including sexual minorities, are disproportionately exposed to social, health, and historical challenges that may result in exposure to potentially traumatic events (e.g. discrimination, illness, grief, etc.). The recognition of high rates of exposure to potentially traumatic events among participants has led to the recommended adoption of Trauma Informed (TI) principles for use in non-trauma specific research. At present, there are limited examples and discussions about the implementation of TI principles in qualitative research and our literature review yielded no discussion of the use of TI principles in narrative inquiry or with older Latinx communities. In this manuscript, we advocate for the adoption of TI principles when engaging in narrative inquiry with older Latinx adults. Second, we discuss examples of TI guided practices we employed while conducting the Palabras Fuertes study of life history narratives with older Latino immigrant gay men living in New York City. Finally, based on these experiences, we provide recommendations for incorporating TI into future narrative research with older Latinx communities.