title: Informal care for people with chronic psychotic symptoms: four case studies in a San community in South Africa.
abstract: Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low- and middle-income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi-structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi-structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients' needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients' vulnerability as caregivers could redirect care-giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis-related mental health problems, community-based mental healthcare should broaden its scope and incorporate local strengths and challenges.
authors.affiliation: Amsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, the Netherlands.|African Studies Centre, Leiden, the Netherlands.
authors.forename: Thijs N
authors.initials: TN
authors.lastname: den Hertog
authors.affiliation: Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, the Netherlands.
authors.forename: Andrew R
authors.initials: AR
authors.lastname: Gilmoor
mesh_terms: D017028:Caregivers; D002908:Chronic Disease; D006801:Humans; D007407:Interviews as Topic; D019370:Observation; D011618:Psychotic Disorders; D036301:Qualitative Research; D013019:South Africa
keywords: South Africa; care-giving; informal care; mental health; psychosis