ABSTRACT
Participatory research approaches have brought to the forefront the ethical obligations that researchers have towards underserved communities. We describe how a community-academic partnership used community-based participatory research principles and structure to develop a human subjects research protocol and to address the ethical concerns community stakeholders had regarding maternal mental health research with Black women.
Subject(s)
Black or African American/psychology , Community-Based Participatory Research/organization & administration , Mental Health/ethnology , Mothers/psychology , Anxiety Disorders/ethnology , Community-Based Participatory Research/ethics , Community-Institutional Relations , Cultural Competency , Female , Georgia/epidemiology , Health Status Disparities , Humans , Perinatal Care , Poverty , Risk Assessment , Universities/organization & administrationABSTRACT
BACKGROUND: Little is known about the organization of clinical services for Huntington's disease (HD). OBJECTIVE: To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. METHODS: In 2014, a 69-item survey was administered to sites taking part in or eligible for the Enroll-HD study. RESULTS: Of 231 sites surveyed, 121 (52.2%) sites in Europe, North America, Latin America, and Oceania responded. Most sites in the sample serve large populations, with 61.1% serving more than 1.5 million people, and a further 33% serving >500,000. Almost all (86.0%) centers see patients from outside their region. The majority of centers (59.7%) follow 50-199 patients, 21.9% care for more than 200. Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. Multidisciplinary case reviews are offered in 54.5% of sites, with outreach clinics offered by 48.1%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centers. Most centers (70.4%) report following published guidelines or local care pathways for HD. CONCLUSIONS: Most centers serve a large population and use a multidisciplinary approach. The survey gives insight into factors underpinning HD service delivery globally. There is a need for more in-depth studies of clinical practice to understand how services are organized and how such features may be associated with quality of care.
