The Medical Research Council National Survey of Health and Development (NSHD) is Britain’s longest-running birth cohort study. From their birth in 1946 until the present day, its research participants, or study members, have filled out questionnaires and completed cognitive or physical examinations every few years. Among other outcomes, the findings of these studies have framed how we understand health inequalities. Throughout the decades and multiple follow-up studies, each year the study members have received a birthday card from the survey (...) staff. Although the birthday cards were originally produced in 1962 as a method to record changes of address at a time when the adolescent study members were potentially leaving school and home, they have become more than that with time. The cards mark, and have helped create, an ongoing evolving relationship between the NSHD and the surveyed study members, eventually coming to represent a relationship between the study members themselves. This article uses the birthday cards alongside archival material from the NSHD and oral history interviews with survey staff to trace the history of the growing awareness of importance of emotion within British social science research communities over the course of the 20th and early 21st centuries. It documents changing attitudes to science’s dependence on research participants, their well-being, and the collaborative nature of scientific research. The article deploys an intertextual approach to reading these texts alongside an attention to emotional communities drawing on the work of Barbara Rosenwein. (shrink)

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' (...) on the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

Objectives: Mental disorders are vastly underdiagnosed in low-income countries that disproportionately affect women. We aimed to evaluate the prevalence of common mental disorders in newly postpartum women, and stigma associated with mental health reporting in an Ethiopian community using a validated World Health Organization survey.Methods: The Self Reporting Questionnaire for psychological distress was administered in Amharic by nurses to 118 women aged 18–37 years who had given birth in the prior 3 months in the Glenn C. Olsen Memorial Primary Hospital (...) in Yetebon. Mental health stigma among the four nursing staff was assessed using Link and Phelan's Components of Stigma.Results: Among 118 women surveyed, 18% had a probable common mental disorder using the SRQ 4/5 cutoff and 2% admitted to suicidal thoughts. Presence of stigma in the healthcare staff was verified, including labeling, stereotyping, separating, and status loss and discrimination.Conclusion: Postpartum mental health disorders as well as stigma against such diagnoses are common in the Yetebon community. There is an urgent need for increased availability of properly trained and supervised healthcare staff in the identification and referral of postpartum women with common mental disorders. (shrink)

Scabies is a global problem and is of such concern that in 2013 it was added to the World Health Organization list of neglected tropical diseases.1 Due to its highly contagious nature, it is easily spread where humans are in close living environments, and is therefore of particular concern in nursing homes where it may affect both residents and staff. Hence, prompt diagnosis and appropriate treatment of cases are important to control the spread; however, this is hindered by current (...) difficulties in rapid diagnosis. Conducting research with vulnerable populations involves careful attention to the interest of the individual. It is indisputable that all potential research subjects must have provided consent to participate in research, and it is less clear how to proceed when potential research subjects lack the capacity to provide consent. (shrink)