Abstract
BackgroundClient-centred care serves as the foundation for healthcare policy. Indeed, various instruments for assessing clients’ experiences of care and support are increasingly used to provide insights into the quality, and client-centred nature, of the care and support provided, which, in turn, aids the development of subsequent improvements. The unique characteristics of care and support for people with intellectual disabilities (ID), such as the need for both lifelong and life-wide care and support across all aspects of clients’ lives, led to an initiative within Dutch ID care to jointly develop a range of instruments to assess the experiences of clients receiving ID care and support. Individual clients’ experiences and suggestions for improvement, which are embedded in clients’ care plan cycles, constitute the foundation of this Range of Instruments. This paper provides a unique, bottom-up, exhaustive account of the process of developing the Range of instruments used to assess the experiences of clients in the field of Dutch ID care.MethodsRelevant documents at three levels (i.e. 1) national documents, such as policy papers and governmental reports, 2) documents and reports from the Dutch Association of Healthcare Providers for People with Disabilities (VGN) along with minutes from the meetings of the expert Committee who assessed the instruments, and 3) correspondence between the Committee and developers as well as the forms used in the assessment process for each instrument) were qualitatively analysed by two researchers who had no affiliation with the development of the Range of instruments used to assess clients’ experiences in ID care and support. All of the documents were inductively coded using a thematic analytical approach. Informants who were either currently or previously involved in the development of these instruments were asked to provide clarification over the documents themselves and to explain the context in which they were produced.ResultsThe development of the range of instruments can be classified into four phases, namely: 1) supporting the bottom-up development of initiatives to assess clients’ experiences, 2) focusing on learning and further development, 3) stimulating exchange between the developers and users of the instruments and the Committee responsible for assessing them, and 4) further development in response to the changing times and new landscape.ConclusionsThe range of instruments were found to be appropriate for a variety of clients in ID care and support, specifically in terms of assessing their individual experiences and gaining insight into their suggestions for improvement, and effective in terms of collaboratively improving the quality of ID care and support. In so doing, these instruments potentially provide an avenue through which clients’ experiences can be embedded in the process of ID care and support. Other specific features in the development of these instruments, namely their incremental adoption, ongoing evaluation and strong practice orientation, were also found to be suitable for other care contexts’ attempts to respond to the top-down policy objectives of client-centeredness and translating outcomes into direct care practice.
Highlights
Client-centred care serves as the foundation for healthcare policy
Client-centred care is understood as a form of care and support that is respectful of, and responsive to, the preferences, needs, and values of individual clients [2], with the overall aim being to improve the quality of care and support, and, in turn, clients’ quality of life [3,4,5]
This is visible at the level of the individual client, were there has been a marked shift towards empowering people with intellectual disabilities (ID) and their relatives [14], as well as in national health policy
Summary
Client-centred care serves as the foundation for healthcare policy. various instruments for assessing clients’ experiences of care and support are increasingly used to provide insights into the quality, and clientcentred nature, of the care and support provided, which, in turn, aids the development of subsequent improvements. The unique characteristics of care and support for people with intellectual disabilities (ID), such as the need for both lifelong and life-wide care and support across all aspects of clients’ lives, led to an initiative within Dutch ID care to jointly develop a range of instruments to assess the experiences of clients receiving ID care and support. Since the late 1980s, Dutch national health policy obliges care providers for people with ID to provide support based on client-centred planning [13]. Respect for autonomy and, the importance of actively involving people with ID in the decision-making process related to both their own support planning and healthcare policy more broadly, is underscored in the United Nations Convention on the Rights of Persons with Disabilities [15]
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