Service Impacts on Quality of Life (SIQOL)
The World Health Organisation (WHO) defines Quality of Life (QOL) as “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment”.
Likewise, in the disability field, QOL is best viewed as a subjective perception of individuals. When it comes to the rehabilitation sector, the QOL becomes an important factor to consider when assessing the impact of the service delivered. Measuring QOL empowers those using the service by giving them the possibility to provide a full account of the impact of the service based on their own experience and perception. Furthermore, having feedback directly from those using the service and on the impact the service has on their lives, service providers can use this to further improve the service based on concrete needs.
Lastly, service providers can use QOL assessment tools to demonstrate how programmes effectively serve the users and meet their needs. Having this information can be particularly important when presenting results to managers, funders or policy-makers.
Given the crucial role of QOL for service users, EPR and its members developed a unique QOL system to measure impact of services on perceived quality of life and outcomes for people with disabilities. It includes a logical modelling procedure, a questionnaire for service users and benchmarking process for participating organisations.
QOLIS allows respondents to link their ratings of QOL directly to the service in which they participated and can be used to gather ratings from respondents who are still actively participating in a service. Secondly, QOLIS has been evaluated for reliability and found to be stable over time. A summary of the results of the QOLIS reliability study is presented in Annex 5 of this manual. In addition, a number of design features are included to address the design standards recommended by Perry and Felce.
The QOL framework adopted for the EPR benchmarking process was adapted from the work of Schalock. [6] He identified eight critical components of quality of life: emotional well-being; interpersonal relations; material well-being; personal development; physical well-being; self-determination; social inclusion; and rights. This model informed the work of a research working group of the International Association for the Scientific Study of Intellectual Disabilities (IASSID).[7] which developed a multi-element framework of quality of life relevant to public policy, evaluation of services, innovation and the identification of support need of individuals. A set of principles and guidelines were also generated targeted at researchers and professionals interested in implementing QOL studies and initiatives.
[6]Schalock RL (1996) Reconsidering the conceptualization and measurement of quality of life. In Schalock RL (Ed.), Quality of life. Volume I: Conceptualization and measurement. Washington: American Association on Mental Retardation, pp.123–139.
[7]Schalock, RL, Brown I, Brown R, Cummins RA, Felce D, Matikka L, Keith KD and Parmenter, T. (2002). Conceptualization, measurement and application of quality of life for persons with intellectual disabilities: report of an international panel of experts. Mental Retardation 40(6): 457–470.
[6]http://www.tbims.org/combi/FAM/ and http://www.tbims.org/combi/FIM/index.html