Development and Preliminary Validation of the QUALITRA-ID-P: A User-Orientated Questionnaire for Parents and Relatives to Assess the Quality of Care and Service Trajectories for Intellectually Disabled Persons

Abstract

Background Care and service trajectories for people with intellectual disabilities are routes within the health care delivery system that consist of all the steps that people with intellectual disability and their families have to take in order to realize needed care and services. In contrast to the growing body of system-orientated knowledge concerning quality of care delivered through collaborative relationships between care providers, specific userorientated knowledge is still largely lacking. Aim This article aims to describe the development and the preliminary validation of a user-orientated questionnaire for parents and ⁄ or relatives of people with intellectual disability (QUALITRA-ID-P) to assess the quality of care and service trajectories of their children ⁄ relatives with intellectual disability. Methods First, the phenomenon 'care and service trajectories' was conceptualized on the basis of document analysis and semi-structured interviews with key informants. Second, quality of care and service trajectories were operationalized using focus group discussions with parents and relatives as well as an extensive literature review. Third, the QUALITRA-ID-P was constructed using the results of the conceptualization and operationalization. Fourth, the QUALITRA-ID-P was refined in two stages: examination of (i) feasibility, understandability and completeness and (ii) preliminary validation.Results The final QUALITRA-ID-P is a 49-item scale with good reliability and validity. An exploratory factor analysis resulted in a 3-factor solution with Cronbach's alpha coefficients of 0.98, 0.83 and 0.91. Organizations in the disability sector can use the QUALITRA-ID-P to understand better the experiences of quality of their clients' relatives and as a result improve the quality of trajectories.

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

“…Barelds et al (2011) designed a questionnaire to measure parents and relatives' perception of the quality of users' care and services trajectory at the same time as our group conducted the present investigation. Their questionnaire, the QUALITRA-ID-P,is based on the previously identified determinants that also formed the basis of the present study.…”

Development of a questionnaire to assess the quality of service trajectories in autism spectrum disorder from families' perspective

“…This initiative stemmed from a framework for the evaluation of the quality of integrated care developed in the Netherlands (Barelds et al, 2009(Barelds et al, , 2010(Barelds et al, , 2011 and the evaluation of the early childhood services in ASD in Québec (Rivard et al, 2015a(Rivard et al, ,b, 2016. relates to the quality of services).…”

“…The perceived quality of services depends on the obstacles and facilitators that individuals encounter over the course of their trajectory. Based upon this perspective, Barelds et al (2009), Barelds, Van De Goor, Van Heck, and Schols (2010), Barelds, van de Goor, van Heck, and Schols (2011) investigated the care and service trajectories in ID and users' and families' perception of quality of these trajectories. The research group first reviewed the relevant government regulations applicable to the Netherlands, institutions' annual reports and written policies.…”

“…Ultimately, the authors developed and conducted the preliminary validation of a Dutch language questionnaire called the QUALITRA-ID-P (Barelds et al, 2011).…”

“…The research protocols for each phase (development, validation) of this study were approved by the Joint Research Ethics Board Barelds et al (2009Barelds et al ( , 2010Barelds et al ( , 2011. The team also referred to the guidelines proposed by Marsden and Wright (2010).…”