Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client’s perspective

Abstract

General rightsCopyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.-Users may download and print one copy of any publication from the public portal for the purpose of private study or research -You may not further distribute the material or use it for any profit-making activity or commercial gain -You may freely distribute the URL identifying the publication in the public portal Take down policyIf you believe that this document breaches copyright, please contact us providing details, and we will remove access to the work immediately and investigate your claim. Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client's perspective Background: Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. Aim: This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Methods: Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature.Results: The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as 'keeping appointments' and 'time and attention', whereas parents/relatives also referred to broader 'organisational issues', such as 'access to support' and 'problems with placement'. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long-term aspects in care and service delivery.

Do the Institute of Medicine’s (IOM’s) dimensions of quality capture the current meaning of quality in health care? – An integrative review

“…For example, the study by Attree (2001) in relation to patients' and relatives' perceptions of quality gave examples which identified timeliness in relation to the behaviour of nurses who 'came when called, came back when they said and were there when needed/wanted', or in relation to not so good care stated 'they're too busy'. Within the community context, timeliness was associated with reliable behaviour of care providers, such as 'keeping appointments' as well as giving 'time and attention' (Barelds et al, 2009a). Safety of those papers which identified safety as a dimension of quality, only one paper was from a service user perspective (O'Reilly, 2007).…”

In search of quality indicators for Down syndrome healthcare: a scoping review

“…Whereas survival may be the best scenario in the eyes of a physician, a patient may choose functional status above life expectancy. In addition, change in health-status may not always be the primary goal, especially in long-term care [26], support and processes of care may be of greater importance. Indeed, when evaluating user perspectives on this topic, users primarily seem to focus on processes of care or procedural outputs [24, 26].…”

“…In addition, change in health-status may not always be the primary goal, especially in long-term care [26], support and processes of care may be of greater importance. Indeed, when evaluating user perspectives on this topic, users primarily seem to focus on processes of care or procedural outputs [24, 26]. As patients are the experts when it comes to their outcomes, it is essential to include people with DS and/or their parents in the process to define what is valuable to them [35].…”

“…As patients are the experts when it comes to their outcomes, it is essential to include people with DS and/or their parents in the process to define what is valuable to them [35]. Their views on quality differ from those of professionals and researchers [26]. Physicians and all other professionals, including healthcare managers, should also be involved, since they might appraise the usefulness and quality of indicators in a different manner [36].…”

“…care being effective, efficient, accessible, patient-centred, equitable and safe [25]. When it comes to integrated care , other quality dimensions should be considered as well, such as continuity and adequate transitions between care organisations [26]. …”