Quality of Life

This Quality of Life section includes literature relevant to person-centered planning and lifestyle enhancement.  It includes individual studies and syntheses of the literature.  Click on the citations below to be redirected to either the publication  itself (if available) or the publisher’s website where the item can be purchased.
 
Core elements of quality of life include:

  • health and safety,
  • self-advocacy and choice,
  • social interaction and relationships,
  • productive activity, and
  • community participation. 

Positive behavior support is focused on improving quality of life.

Health and Safety Focused

The Expanding Vision of Positive Behavior Support: Research Perspectives on Happiness, Helpfulness, Hopefulness – Carr, E.G. (2007).  Discusses the implications for linking positive behavior support to quality of life indicators (free). 

Mindfulness-Based Positive Behavior Support (MBPBS) for Mothers of Adolescents with Autism Spectrum Disorder: Effects on Adolescents’ Behavior and Parental Stress. – Singh, N. N., Lancioni, G.E., Winton, A., Singh, J., Myers, R., Karazsia, B. (2014).  Evaluates the effects of a treatment model on parent stress and their child’s corresponding decrease in challenging behavior (available for purchase).

Into the Unknown: Aging with Autism Spectrum Disorders – Perkins, E. A. and Berkman, K. A. (2012).  This paper summarizes current research on quality of life indicators for aging adults diagnosed with Autism.  The paper concludes with recommendations for future work. 

Healthy behaviors and lifestyles in young adults with a history of developmental disabilities – Rurangirwa, J., Van Naarden Braun, K., Schendel, D., & Yeargin-Allsopp, M. (2006).  Research paper that presents the results of a health survey that reveals that young adults with developmental disabilities are at a higher risk for poor health and lower quality of life (free).

Self-advocacy and Choice

Self-determination, social abilities and the quality of life of people with intellectual disability – Nota, L., Ferrrari, L., Soresi, S., & Wehmeyer, M. L. (2007).  This study analyzed self-determination and it’s link to quality of life (free).

Person-centered active support – increasing choice, promoting independence, and reducing challenging behavior – Beadle-Brown, J., Hutchinson, A. & Whelton (2012). An examination of the effects of person centered practices on engagement, participation, choice-making opportunities and the reduction of self-stimulatory behavior for 30 people residing in community based homes.

Enhanced self-determination of adults with intellectural disability as an outcome of moving to community-based work or living environments – Wehmeyer, M. L. and Bolding, N. (2001).  This paper presents evidenced that congregate and group work and living settings limit the choice and decision making for those receiving services (free).

Evaluating and increasing in-home leisure activity among adults with sever disabilities in supported independent living – Wilson, P. G., Reid, D. H., & Green, C. W. (2006).  When supported with making choices around leisure time people increased leisure activity engagement.  This study summarizes the methods and results of the staff training and pair choice design (free).

The relationship between quality of life and self-determination: an international study – Lachapelle, Y., Wehmeyer, M.L., Haelewyck, M. C., Courbois, Y., Keith, K. D., Schalock, R., Verdugo, M. A. & Walsh, P. N. (2005).  An international study with results that showed a strong correlation with high quality of life and strong self-determination (free). 

Social Interaction and Relationships

The application of positive behaviour support using inter-disciplinary systemic and family-centred intervention. – McIver & McVilly (2012).  Available for purchase.

Variables within a Household that Influence Quality-of-Life Outcomes for Individuals with Intellectual and Developmental Disabilities Living in the Community: Discovering the Gaps – Francis, G. L., Blue-Banning, M., & Turnbull, R. (2014).  A deeper dive into what makes a good match when finding community based house for people that contribute to a high quality of life for the person (free).

Mindful caregiving increases happiness among individuals with profound multiple disabilities – Singh, N. N., Lancioni, G. E., Winton, A., Wahler, R. G., Singh, J., & Sage, M. (2004).  Evidence that teaching caregivers mindful interactions increases happieness of those being supported (free).

Quality of Rapport as a Setting Event for Problem Behavior: Assessment and Intervention – Darlene Magito McLaughlin and Edward G. Carr (2005).  This paper provides a method to assess the quality of rapport established by caregivers with the people they support and presents a training package to improve quality of rapport.  Implications for the quality of life for those being supported is discussed (free).

Community Participation

Cross-cultural study of core quality of life indicators – Schalock, R. L., Verdugo, M., Jenaro, C., Wang, M., Wehmeyer, M., Xu, J., & Lachapelle, Y. (2005).  A study that expands on previous research into cultural backgrounds impact on quality of life assessment (free).

In Search of Meaningful Daytimes: Case Studies of Community-Based Nonwork Supports – Jennifer Sulewski (2010).  A paper that summarizes case studies from two states in implementing community networking and the impact on quality of life (free).

Positive behavior support and supported employment for adults with severe disability – West, E. A. and Patton, H. A. (2010).  Evidence that people who are giving the opportunity to work in a community based setting, rather than a segregated setting due to problem behavior, generally produces better behavioral outcomes and improves quality of life (free).

General Quality of Life Focus

Person-centered planning: Analysis of research and effectiveness.  – Claes, C., VanHove, G., Vandevelde, S., VanLoon, J., & Schalock, R.L. (2010).  A paper that examines what research has been done in the area of person centered practices and what evidence exists for the effectiveness (available for purchase).

Positive Behavioral Support of Adults with Developmental Disabilities: Assessment of Long-term Adjustment and Habilitation Following Restrictive Treatment Histories. – Bird, F. and Luiselli, J. (2000).  Evidence is presented on the lasting effects of using positive behavior support in place of restrictive procedures and the impact to quality of life (available for purchase).

Person-centered planning: Research, practice, and future directions. – Steve Holburn (2002).  A guide book for teams implementing person centered positive behavior supports (available for purchase).

Quality of Life: Its Definition and Measurement – Felce, D., and Perry, J. (1995).  An article that outlines the complexity in measuring quality of life domains and methods to address measuring quality of life (free).

Integrating best practice in person-centered planning, wraparound, and positive behavior support to enhance quality of life. – Freeman, R., Enyart, M., Schmitz, K., Kimbrough, P., Matthews, P., & Newcomer, L. (2014). In F. Brown, J. Anderson, & R. De Pry (Eds), Individual Positive Behavior Supports: A Standards-Based Guide to Practices in School and Community-Based Settings (pp 241-257). Baltimore: Paul H. Brookes (for purchase).