Date Presented 03/26/20
Through qualitative synthesis of findings from 10 grounded-theory studies on perceptions of QOL of engaged patients with chronic conditions, the authors propose the theory of occupational autonomy, which defines QOL as one’s ability to participate in one’s valued, desired, or chosen occupations, providing powerful support for AOTA’s Vision 2025, which stresses OT’s role in maximizing “health, well-being, and QOL for all people, populations, and communities. ”
Primary Author and Speaker: Barbara Kornblau
Contributing Authors: Debora Oliveira, Sarah Mbiza
PURPOSE: The World Health Organization’s International Classification of Functioning (ICF) and the Occupational Therapy Practice Framework, focus on the significance of participation. AOTA’s new Vision 2025 focuses on the role of Quality of Life (QOL), stating: “
As an inclusive profession, occupational therapy maximizes health, well-being, and quality of life for all people, populations, and communities through effective solutions that facilitate participation in everyday living.” (AOTA, 2019). Traditionally, quality of life derived from medical model attempts to measure health or illness-related status via self-report. For example, the SF-36, a popular, non-disease specific, self-report survey used to measure QOL, was created to measure health outcomes in medical studies (Ware & Sherbourne, 1992). Survey questions rate health, and pain, and inquire about physical and mental health and activity level (Ware & Gandek, 1998). The Perceived Quality of Life Scale, (PQOL), also a self-report survey, is based on a model that defines QOL as evaluation of major categories of “fundamental life needs” (Patrick, et. Al, 2000). It asks about satisfaction with 19 items, including physical health, amount of sleep, help from family, and self-care. Although the PQOL addresses some psycho-social and physical domain issues, it fails to look at participation in life beyond some limited ADLs. Like other medical-model QOL assessments, the PQOL, looks at standardized objective measures of health and makes a leap to infer QOL. However, these measures do not equate to QOL from the engaged patient’s perspective. This qualitative synthesis looks at how engaged patients define QOL, and how participation as a health behavior can help manage chronic conditions.
DESIGN: The researchers conducted 10+ grounded theory studies, recruiting 10+ different population groups of people living in the US, from online engaged patient support communities on Facebook and Twitter. Participants were active members of online support communities for people with chronic conditions, including arthritis, spinal cord injuries, chronic pain, and autism, among others.
METHOD: Following Institutional Research Board approval, the authors used Internet-based, open-ended, qualitative surveys to ask participants what QOL means to them. Data was analyzed using an iterative, grounded theory approach until saturation was reached. Multiple levels of coding were employed. A team of researchers performed the data analysis to insure triangulation, rigor, and trustworthiness of data. This was repeated in 10+ studies of people with different chronic conditions.
RESULTS: Significantly, none of the participants defined QOL in terms of symptoms or treatment. In each study, participants defined QOL in terms of participation in specific occupations they valued/desired. The practice implication for OTs supports the need to develop QOL measures based on participation, to complement existing medical model-based measures, and to advocate for them.
CONCLUSION: These studies support the theory of occupational autonomy: the ability to independently choose meaningful occupations in which people wish or choose to participate, the enabling of that choice, and the ability to carry out one’s plans to participate in the chosen occupations. Occupational therapy is well positioned to develop measures meaningful to individuals’ occupational autonomy, hence their QOL and promote the distinct value of OT.
IMPACT STATEMENT: Occupational Autonomy can provide a powerful influence on practice, policy, and science, demonstrating occupational therapy’s distinct value through promotion of methods to measure QOL from the patient’s perspective, based upon participation in chosen occupations, as opposed to one’s limitations.
References
American Occupational Therapy Association. (2019). AOTA unveils vision 2025. Retrieved from https://www.aota.org/AboutAOTA/vision-2025.aspx
Patrick DL, Kinne S, Engelberg RA, Pearlman RA. (2000). Functional status and perceived quality of life in adults with and without chronic conditions. Journal of Clinical Epidemiology, 53(8), 779-785. DOI: https://doi.org/10.1016/S0895-4356(00)00205-5
Schwartz, C. E., Andresen, E. M., Nosek, M. A., & Krahn, G. L. (April 01, 2007). Response Shift Theory: Important Implications for Measuring Quality of Life in People With Disability. Archives of Physical Medicine and Rehabilitation, 88, 4, 529-536. DOI:10.1016/j.apmr.2006.12.032
Ware. J. & Gandek, B. (1998) Overview of the SF-36 health survey and the international quality of life assessment (IQOLA) project. Journal of Clinical Epidemiology. (51)11, 903-912 DOI: https://doi.org/10.1016/S0895-4356(98)00081-X
