Book Review

Title:  Quality of Life and Intellectual Disability; Knowledge Application to Other Social and Educational Challenges

Editors:  Roy I. Brown and Rhonda M. Faragher
Publisher:  Nova Science Publishers, New York, 2014
ISBN:  978-1-62948-264-4 (hard cover)  
Cost:  $189.00, 418 pages
Reviewer: James G. Linn, PhD

      In response to a need to systematically measure the effects of public policy and programs on individuals and communities, social scientists in the 1970s developed quality of life (QOL) studies. In many cases, they were theoretically based, for example, Maslow's Hierarchy of Needs (1954). They generally assumed that quality of life was a multi-dimensional concept and used quasi-experimental designs and quantitative measures that previously had been found to be valid and highly reliable indicators across various populations, for example, life satisfaction. In the 1980s, clinicians/researchers working in the fields of intellectual and developmental disabilities also began to study the quality of life of their patients. They were concerned with how such contextual conditions/variables as poverty, parents' educational level, and ethnicity related to successful interventions and how successful and not so successful interventions impacted individuals with intellectual and developmental disabilities quality of life or personal well being. These studies tended to be small sample, one-time interviews using qualitative and sometimes quantitative measures. They have become more rigorous over time using mixed method (quantitative and qualitative) designs and validated indicators that allow for meaningful comparison of findings and study replication.
      
      In Quality of Life and Intellectual Disability; Knowledge Application to Other Social and Educational Challenges, Roy I. Brown and Rhonda M. Faragher have brought together 17 essays that describe the historical development of the concept of QOL in research on intellectual and developmental disabilities and the wider application of the evolved quality of life framework to policy management and practice, family studies, gerontology, and other issues. The edited book includes essays from scholars in a wide range of disciplines, including disability studies, education, nursing, psychology, social work, and theater, from many different nations (Australia, Canada, Netherlands, Spain, United Kingdom, and United States). The target audiences are clinical researchers, policymakers, and advanced graduate students.
      
      While this book has many excellent contributed papers, several are outstanding for their original contributions to knowledge about QOL and mental disability. Robert Schalock and Miguel Verdugo discuss quality of life as a change agent. They describe how the QOL concept impacted programs and applications in the area of intellectual disability and the wider field of disability studies and how the framework has been useful for planning organization change. In their concluding discussion, they provide six useful guidelines for implementing the QOL framework in research and three more related to organizational innovations. For research, the guidelines are:
      
* Use a multidimensional perspective in QOL conceptualization;

* For QOL studies use multivariate research designs & methodological pluralism;

* Note cultural and philosophical properties properties of QOL;

* Validate QOL across diagnostic groups;

* Use personal and family well-being/QOL as outcome variables;

* Construct QOL theory from empirically validated concepts and hypotheses.

To apply QOL to organizational change, the guidelines are:

* Use QOL concepts in organizational policies and practices;

* Implement QOL concept to expand human rights;

* Teach QOL concepts in training programs.

      Nina Zuna, Ivan Brown, and Roy Brown present a support-based framework to enhance quality of life in families. Their Family Quality of Life Support Based Framework emphasizes Protective and Supportive factors. It is assumed that when these factors are appropriately integrated into services provided to families with individuals with intellectual and/or developmental disabilities, the services will have better outcomes for family quality of life. Some of the salient Protective factors include:
      
* Mother’s sense of coherence;

* Family members' orientation to familism;

* Parents' positive perceptions of their children;

* Family health status;

* Family financial status.

Among the key Supportive factors are:

* Accessible Disability specific programs;

* Partnerships between professionals and families;

* Parent support groups;

* Family therapy programs;

* Respite services.

      Trevor Parmenter focuses on the link between social inclusion and a good quality of life for persons with intellectual and developmental disabilities. He maintains that creating a positive self image is essential for a good quality of life. Further, for him, it is through the process of social inclusion in which persons receive positive feedback for successfully performing various social roles that they develop a well grounded self-esteem. While the connection between inclusion and a good quality of life for persons with intellectual and developmental disabilities is clear to most professionals working in the field, Parmenter observes that the way forward to greater inclusion is obstructed by the dominance of market ideology. This belief system, which prevails in most industrialized societies and is growing globally throughout the developing world, tends to assess social initiatives, including those programs for persons with intellectual and developmental disabilities, by their economic impact.
      
      Further, individual worth is valued by the person's level of contribution to the community. This is a challenge to the self-esteem and perceived well being of vulnerable people who throughout their lives may be dependent on various social supports.

      Quality of Life and Intellectual Disability: Knowledge Application to Other Social and Educational Challenges is appropriate to a targeted audience of clinical researchers, policy makers, and advanced graduate students. It contributes to existing knowledge, particularly through the chapters on Quality of Life as a Change Agent, Family Quality of Life in Intellectual and Developmental Disabilities, and Inclusion and Quality of Life. Overall, the articles included in this edited book are interesting because they include social observations and related professional experiences of scholars from many different countries. However, priced at $189, it may be well beyond the budgets of most intended users. Further, this reviewer found the font small and, therefore, somewhat difficult to read. Consequently, it may not be accessible for potential readers with vision impairments.
      
      Reference
      
Maslow, A. (1954).  Motivation and personality. New York, NY: Harper. 

James G. Linn, PhD, Optimal Solutions in Healthcare and International Development, has more than 10 years experience working in quality of life studies in the United States and developing countries. He may be contacted at Jlinn87844@aol.com.