The Expertise Centre Independent Living (Belgium) published a study in May 2011 on quality of life of people who use a Personal Assistance Budget (PAB) in Flanders to organize their support. Following this research we spoke with the renowned professor Robert Schalock. He tells us more about the concept of Quality of Life.
-Professor Schalock, first of all we would like to thank you for this interview! It is quite an honor for us and an enrichment to our monthly newsletter.
It is my pleasure, Linde.
-A lot of our readers have heard about you and your work in the field of Quality of Life-research. For the people that don’t know who you are, could you introduce yourself?
The concept of quality of life appeared in my writings in the mid 1980s based on the evaluation of community based programs in Nebraska. At that time, we were establishing community-based residential and vocational programs for persons with intellectual disability and were placing individuals into more independent and productive community environments. We were proud of our accomplishments were as we continued the research activities it became apparent that something was missing in our work. I remember well, for example, making the following comment in a 1986 AJMR article: “Although we had succeeded in placing people into more independent and productive environments, we had overlooked an important item: their quality of life.’Even though I knew very little about the concept from a literature perspective, intuitively it made good sense to focus on a life of quality, which lead to the work on quality of life that I have been involved in ever since.
-You are an expert in the field of ‘Quality of Life’. Could you explain this concept to our readers? How can they explain this concept in an understandable way to someone who has never heard about it?
I think the best definition of [individual] quality of life is a multidimensional phenomenon composed of core domains influenced by personal characteristics and environmental factors. These core domains are the same for all people, although they may vary individually in relative value and importance. In this regard, the assessment of quality of life domains is based on culturally sensitive indicators.
Within our conceptual and measurement model, the three empirically derived and validated factors are: Independence, Social Participation, and Well-Being. Within each Factor one finds the following Domains:
-Independence: Personal Development and Self-Determination.
-Social Participation: Interpersonal Relations, Social Inclusion, Rights.
-Well-Being: Emotional Well-Being, Physical Well-Being, and Material Well-Being
-We hear a lot about research in the field of QoL. But you are probably even better informed. Are there any recent studies that drew your attention? What should our readers add to their library?
I think that the best resource is the book that I published jointly in 2007 with Jim Gardner and Val Bradley: Quality of life for people with intellectual and other developmental disabilities: Application across individuals, organizations, communities, and systems. It is available through AAIDD.
From a research perspective I would recommend an article that I co-author with Mian Wang:
Wang, M., Schalock,R. L., Verdugo, M.A., & Jenaro, C. (2010). Analyzing the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115, 218-233.
-The Expertise Centre Independent Living gathers and disseminates knowledge about Independent Living. In what way do you think Quality of Life (as a concept or construct) can contribute to our strive for Independent Living?
The QOL construct incorporates a number of core domains that are essential to the hopes and dreams of all persons. Based on the Wang et al (2010) article referenced above, the three higher order QOL Factors are Independence, Social Participation, and Well-Being. The first two Factors encompass Personal Development and Self-Determination (“Independence’), and Interpersonal Relations, Social Inclusion, and Rights (‘Social Participation’). Each of these resonates with the desire that each of has to live more independently.
-Within the topic Independent Living, we pay a lot of attention to systems of direct payments/ personal budgets. With direct payments people can organize their own support instead of depending on it. This is the strength of direct payments. Do you think receiving a personal budget can have an impact on someone’s experienced Quality of Life? In what way?
The literature is very clear here: Yes! Since personal control is also part of self-determination. You might want to check the work that is being done at the University of Minnesota by Lakin on personal budgets.
Recently we notice the beginning of a shift in thinking about support for people with disabilities. We see more and more attention being paid to outcomes (in stead of an exclusive focus on quality of care).
-What do you think about this growing shift (positive, negative, what is missing, direction in the future,…)? And how can we measure these outcomes using the construct QoL?
I have just published (currently in press with Brookes Publishing-Baltimore) a book with Dr. Miguel Verdugo entitled, ‘A Leadership Guide to Redefining ID/DD Organizations: Eight Successful Change Strategies.’ Throughout this book we stress the critical need to evaluate personal outcomes (defined in reference to the 8 core QOL domains of our conceptual and measurement model) and use this information for multiple purposes including reporting, monitoring, evaluation, and continuous quality improvement.
A number of jurisdictions have developed Personal Outcome Scales based on our QOL model. One if the Personal Outcomes Scales (jointly published by the University of Gent and Arduin); a second is the GENCAT (available from Dr. Miguel: Verdugo@usal.es).
-Sometimes we hear critique on measuring QoL. Some critics told us that QoL only is what people think it is. It is only a narrative, not something you can express in numbers. You can’t compare narratives (they are not like numbers), so you can never compare someone’s QoL to that of any other person. What would you answer these critics? And if we do use numbers, how can we ensure that a persons narrative is still respected /present within the numbers?
An essential misunderstanding among such critics is that one’s quality of life can be assessed on the basis of personal/subjective appraisal AND objective conditions related to life events and circumstances. Furthermore, when we assess a person’s quality of life, the assessment is a conversation and NOT AN ASSESSMENT. The 8 domains and the 6-8 indicators for assessing each are culturally sensitive and presented in a psychometrically sound way to ensure the reliability and validity of the data. The assessment instrument merely structures the conversation, and structured interviews are commonly used and reflect best practices in a number of fields.
One final point:The purpose of QOL assessment IS NOT TO COMPARE PEOPLE!. Individual scores and profiles are used as the basis for communication with the person and asking a basic question that ALL service providers should ask themselves: “How can we enhance THAT PERSON’S quality of life?” Comparison is an 18th century measurement concept.
-These are very interesting topics! Can we learn about QoL in Belgium to? Which people can we turn to in our little country?
You have one of the world’s top QOL researchers at University College: Claudia Claes. Also, right across the border in the Netherlands you have Arduin which has developed a world famous community based approach based on the concept of quality of life and the supports paradigm.
-And for people who are prepared to travel a bit further? Which places should they visit this summer and fall to learn more about QoL or other related topics?
Go to Arduin to see a quality of life-focused community based program; go to Salamanca to learn about support employment (Borjas) and quality of life research; and go to University College-Gent to talk with Claudia!
-It is clear to us your schedule is already filled for this summer and fall! However, we hope to meet up again soon. Thank you very much!
You are more than welcome.
VIDEO: What is Quality of Life? – Dr. Robert Schalock