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Support characteristics associated with the quality of life of people with profound intellectual and multiple disabilities; the perspective of parents and direct support staff
- Authors:
- PETRY Katja, MAES Bea, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 4(2), June 2007, pp.104-110.
- Publisher:
- Wiley
The authors examined which support characteristics are associated with the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). The authors invited parents and direct support staff of people with PIMD to adopt the perspective of their child or the person with PIMD for whom they care. Some 76 parents and direct support staff of people with PIMD were interviewed, and to obtain data, transcripts were analyzed in-depth. The respondents mentioned: (1) characteristics with regard to the structure of the setting (physical environment, staff ratio, staff turnover, group size, and group composition); (2) characteristics with regard to the internal organization of the support (partnership, teamwork, interdisciplinary, and support planning); and (3) characteristics with regard to the support staff (experience, sensitive responsiveness, commitment and motivation, physical strength, knowledge and skills, and self-reflection). The respondents considered structural as well as operating features of the support setting to be important for the QOL of people with PIMD. The authors conclude that their main emphasis, however, was on the central role of direct support staff in supporting people with PIMD.
How parents experience the quality of support: a survey in residential care
- Authors:
- LUIJKX Jorien, BRUG Annet ten, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(1), 2013, pp.37-44.
- Publisher:
- Wiley
This study examined the views of parents and/or legal guardians on the quality of support provided to people with an intellectual disability (ID) in residential care in the Netherlands, in order to improve the partnership between parents/legal guardians and facilities. A questionnaire developed in close cooperation with parents specifically for this aim was sent to 1,785 households (parents and/or legal guardians) of clients in the Netherlands. Types of residential care included group homes, community living, and assisted living facilities, to more sheltered housing and institutional placements. The questionnaire consists of the following five subsections: daily care, housing, day services, leisure activities, and communication. A multiple regression analysis was performed to determine which factors contributed to the satisfaction of parents and/or legal guardians. The questionnaires returned (n = 1,058) showed that respondents rated the overall quality of support at an average grade of 7.3 out of 10. Small but mostly significant differences were found between the subsections. Special attention should be paid to the percentage of parents and/or legal guardians who gave unsatisfactory scores (10%) and the substantial percentage (25%) of parents and/or legal guardians that rated the quality of care only marginally satisfactory (grades 6–7). (Edited publisher abstract)
Domains of quality of life of people with profound multiple disabilities: the perspective of parents and direct support staff
- Authors:
- PETRY Katja, MAES Bea, VLASKAMP Carla
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(1), March 2005, pp.35-46.
- Publisher:
- Wiley
This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with profound multiple disabilities. They investigated the effect of the support setting and age of people with profound multiple disabilities on this operationalization. A number (n = 76) of parents and direct support staff of people with profound multiple disabilities were interviewed. Transcripts were analysed in depth. Results showed that the five basic domains as described within the model of Felce and Perry were identified spontaneously by more than half of the respondents as being salient for the quality of life of people with profound multiple disabilities. When asked explicitly, this value rose to between 88.2 and 100%. The operationalization of these basic domains by parents and direct support staff differed in several aspects from operationalizations for other target groups. Neither age nor support setting turned out to have a significant effect on the operationalization. The results supported the multidimensionality of quality of life and the validity of the basic domains for people with profound multiple disabilities. The content of the domains of quality of life differed, however, to a considerable extent for people with profound multiple disabilities. Furthermore, these people are extremely dependent on others for the gratification of their needs and therefore for their quality of life.