Katrina Turner

‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom

ABSTRACT Objectives: Social stigma is commonly experienced by parents of children with autism. Our aim was to understand the nature of stigma experienced by Somali parents of children with autism in the United Kingdom (UK), and to consider how they coped with or resisted such stigma. Design: We used a community-based participatory research approach, collaborating with a community organisation of Somali parents. In-depth interviews with simultaneous translation were conducted with 15 Somali parents of children with autism living in Bristol, UK, in 2015. Parents were sampled purposively to capture diversity in children’s age, severity of autism and time since diagnosis. Directed thematic analysis used Link and Phelan’s model of stigma. Results: Of the 15 participants, 12 were mothers (mean age 36). The 17 children with autism they cared for were 4–13 years’ old, and five were girls. Two main themes with sub-themes were identified: the nature of stigma (labelling and stereotyping; separation; emotional reactions, discrimination and power), and coping and resistance (the power of language; faith as a resource; learning, peer support and community relationships). Children with autism were labelled and stereotyped (e.g. as ‘sick’, ‘naughty’, ‘different’) and parents blamed for not controlling them, leading to social rejection and isolation. Stigma was associated with a poor understanding of autism, a lack of vocabulary related to autism in the Somali community, and prejudice against mental illness and disability. There was evidence of enacted and felt stigma and examples of discrimination. Finding their own language to describe their child’s condition and drawing on faith, learning and peer support were important resources in resisting stigma. Conclusions: Findings inform support for this community, highlighting the need to raise awareness of autism, enable parents to speak openly, and ensure appropriate professional services and interventions are available.

Management of treatment-resistant depression in primary care: a mixed-methods study

Background Non-response to antidepressant medication is common in primary care. Little is known about how GPs manage patients with depression that does not respond to medication. Aim To describe usual care for primary care patients with treatment-resistant depression (TRD). Design and setting Mixed-methods study using data from a UK primary care multicentre randomised controlled trial. Method In total, 235 patients with TRD randomised to continue with usual GP care were followed up at 3-month intervals for a year. Self-report data were collected on antidepressant medication, number of GP visits, and other treatments received. In addition, 14 semi-structured face-to-face interviews were conducted with a purposive sample after the 6-month follow-up and analysed thematically. Results Most patients continued on the same dose of a single antidepressant between baseline and 3 months (n = 147/186 at 3 months, 79% (95% confidence interval [CI] = 73 to 85%)). Figures were similar for later follow-ups (for example, 9–12 months: 72% (95% CI = 63 to 79%). Medication changes (increasing dose; switching to a different antidepressant; adding a second antidepressant) were uncommon. Participants described usual care mainly as taking antidepressants, with consultations focused on other (physical) health concerns. Few accessed other treatments or were referred to secondary care. Conclusion Usual care in patients with TRD mainly entailed taking antidepressants, and medication changes were uncommon. The high prevalence of physical and psychological comorbidity means that, when these patients consult, their depression may not be discussed. Strategies are needed to ensure the active management of this large group of patients whose depression does not respond to antidepressant medication.

Additional file 1: of Assessing the effectiveness of enhanced psychological care for patients with depressive symptoms attending cardiac rehabilitation compared with treatment as usual (CADENCE): study protocol for a pilot cluster randomised controlled trial

Guide for session planning for nurses delivering enhanced psychological care as part of a comprehensive cardiac rehabilitation programme. (DOCX 44 kb)