Operationalizing quality of life for people with profound multiple disabilities: a Delphi study

Abstract

The results provide some evidence that the item pool is a valid operationalization of QOL of people with PMD and can be used in an instrument to measure the QOL of this target group.

A new scale for the measurement of quality of life in children with intellectual disability

“…In the field of intellectual disability (ID) there are distinct conceptual frameworks which have garnered most attention and acceptance from the scientific community (e.g. Cummins, 2005;Felce & Perry 1995;Gardner & Carran, 2005;Petry, Maes, & Vlaskamp, 2005, Petry, Maes, & Vlaskamp, 2007Renwick, Brown, & Raphael, 2000;Schalock & Verdugo, 2002. In this study we have used the eight-domain model proposed by Schalock & Verdugo because it is one of the most frequently cited in the literature and one which has better empirical evidence of validity (Gómez, Verdugo, Arias, & Arias, 2011;Jenaro et al, 2005;Schalock et al, 2005;Wang, Schalock, Verdugo, & Jenaro, 2010), as well as being the most often used in the Spanish context by social and educational service providers.…”

The intellectual developmental disorders Mexico study: situational diagnosis, burden, genomics and intervention proposal

“…After grouping into domains, we will operationalize the synthesis of the findings into specific statements, to potentially be included in the survey. Before formulating the final version of this survey, the statements will be reviewed (using qualitative methods) 72 by three types of stakeholders: service providers (professionals who provide support for social and work inclusion to people with IDD); family members of people with IDD and services users (people with IDD themselves). 71 Individual interviews or focus groups will be used with service providers and family members to review statements, while the nominal group technique will be used with people with IDD.…”

“…73 This technique has been used with people with ID and with dementia. 72,74 A nominal group discussion goes through four steps: 1.) generation of ideas by each individual; 2.)…”

“…voting on consensus or agreement about ideas expressed. 72 The two different panels for the Delphi surveys on screening and diagnostic tools for IDD and on guidelines for services and supports aimed at social and labor inclusion of people with IDD will be recruited through purposeful sampling, including snowball sampling. The research team will generate the initial contact list; each panel may have overlap (participants in both panels).…”

“…All potential participants on the list will be asked about other possible participants they would suggest (with a maximum of 2-3 suggestions each). 72,75 Participants will be emailed a link to the survey for each round, where they will be able to register their level of agreement with names of diagnostic and screening tools or with statements about components of services and supports aimed at social and labor inclusion of people with IDD. They will also be able to make comments about each element.…”