RESUMEN
BACKGROUND: Inclusive research is studied mainly in short-term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long-term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. METHOD: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. RESULTS: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. CONCLUSIONS: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.
Asunto(s)
Investigación Participativa Basada en la Comunidad/organización & administración , Discapacidad Intelectual , Personas con Discapacidades Mentales , Adulto , Femenino , Humanos , MasculinoRESUMEN
BACKGROUND: Little is known about the organisation of after-hours primary care for people with intellectual disabilities (ID), and mainstream care is not self-evidently accessible or fit for this group. A first step towards improvement is a greater understanding of current after-hours primary ID care. AIMS: This study explores the organisation of and experiences with after-hours primary care provided for people with ID in The Netherlands. METHODS AND PROCEDURES: A telephone survey amongst 68 care provider services including questions on organisational characteristics, problem areas, facilitators, and inhibitors. OUTCOMES AND RESULTS: A multitude of different after-hours primary care arrangements were found. Primary care physicians (PCPs) were involved in almost all care provider services, often in alliance with PCP cooperatives. Specialised ID physicians had differing roles as gatekeeper, primary caregiver, or consultant. Most problems during the after-hours arose regarding daily care professionals' competences. Facilitators and inhibitors of after-hours primary care were themed around complexity of, and need for, specialised care, multidisciplinary team of professionals, communication and information, and prerequisites at organisational level. CONCLUSIONS AND IMPLICATIONS: Evidence on specific after-hours health needs of people with ID is needed to strengthen collaboration between specialist ID care services and mainstream healthcare services to adequately provide care.