Care and Service Trajectories for People With Intellectual Disabilities: Defining Its Course and Quality Determinants From the Client's Perspective

Abstract

Care and service trajectories are identifiable routes through service systems that consist of all steps that people with intellectual disabilities (ID) and their families have to take to realize the care and services they need. Trajectories are especially prominent during the transitions from children's services to adult services. Within a service system in Noord-Brabant (in the Netherlands), the authors examined the course of such trajectories and their main bottlenecks and sought to identify their quality determinants. The first research question was addressed by an exercise in document analysis and the holding of semistructured interviews with key informants within the healthcare sector specialized for serving people with ID. A second research question was addressed by means of a literature review on integrated care. The authors observe that trajectories generally follow a "model route" consisting of five phases but may vary according to age category, degree of disability, and life domain. With respect to "bottlenecks," the authors noted that a lack of suitable supply and long waiting lists are good examples. They found that the literature on integrated care revealed that continuity, accessibility, availability, and flexibility of care and services, together with the seamlessness of transitions, are all important quality determinants for people with ID when judging their service trajectories. Bottlenecks and quality determinants of trajectories are strongly interrelated. The authors concluded that the literature and the key informants agree as to which factors are most important in realizing high-quality trajectories for individual clients. They recommend asking which criteria people with ID and their families value most when judging the quality of trajectories.

Quality Determinants of Services for Parents of Young Children with Autism Spectrum Disorders

“…These models include family-centered care (Gabovitch and Curtin 2009), case management (Parellada et al 2013), or community mental health services (Brookman-Frazee et al 2011). Along this line, Barelds et al examined the quality of ID services in the Netherlands from users' and parents' point of view and in the context of integrated care (Barelds et al 2009(Barelds et al , 2010. This team defined integrated care as a model for the delivery of continuous and holistic care, as well as the techniques and processes involved in achieving this goal.…”

“…Barelds et al (2009) found that persons with intellectual disabilities (ID) and their families' perception of the quality of services depended on the obstacles they encountered along their service trajectory. Another study (Little 2003) showed that early access to services is positively associated with parental perceptions.…”

“…Specifically, integrated care ''concerns collaboration and coordination between local and regional institutions from diverse sectors with the intention of decreasing fragmentation and enhancing continuity of care and service delivery'' (Barelds et al 2010, p. 165). On the basis of interviews with 11 key informants and a literature review on integrated care from clients' perspective, they identified five quality determinants of integrated care: continuity, accessibility, availability and flexibility of care and services; and seamless transitions (Barelds et al 2009). In a second phase of their study, the team validated these determinants with eight focus groups consisting of adult users and the parents or other relatives of users aged 5-11 years (Barelds et al 2010).…”

“…On the basis of interviews with 11 key informants and a literature review on integrated care from clients' perspective, they identified five quality determinants of integrated care: continuity, accessibility, availability and flexibility of care and services; and seamless transitions (Barelds et al 2009). In a second phase of their study, the team validated these determinants with eight focus groups consisting of adult users and the parents or other relatives of users aged 5-11 years (Barelds et al 2010). They compared the data with two influential quality assessment models, the SERV-QUAL skeleton (Parasuraman et al 1988) and the structureprocess-outcome model (Donabedian 1980).…”

“…This study on parents' perspective of the quality determinants of the services for young children with ASD is strongly based on previous studies by Barelds et al (2009Barelds et al ( , 2010. As a related issue, we analyzed the extent to which these perceptions were influenced by parents' geographic area of residence.…”