Individuals with cerebral palsy often live well into their 30s, 40s, and even 50s and 60s. However, the longer life expectancy has brought new issues on quality of life among older adults aging with cerebral palsy. Most cerebral palsy–specific quality-of-life measures focus on children and younger adults. The need for a new quality-of-life assessment tool of cerebral palsy older adults is emerging.
This case study aims to test existing quality-of-life measures and to develop a cerebral palsy–specific quality-of-life framework for assessing quality of life of older adults aging with cerebral palsy. The study reached out to a community organization, the United Cerebral Palsy of Greater Cleveland, and engaged with service providers, program advisors, and cerebral palsy individuals. The following methodological techniques and procedures were applied to achieve the research objectives: (1) compiling measures based on the literature review, (2) using contents analysis and focus group to refine the measures abstracted from the literature, (3) interviewing cerebral palsy individuals to test the measures, and (4) bringing comments and feedbacks from interviews to focus group for re-verification of the measures.
The results show, in health-related outcome studies, that dialogue between researchers and participants is an important pathway to gain insightful knowledge on meanings of “health” and “quality of life” among people with disabilities or health conditions. Focus group discussion, contents analysis, “flip flop,” and cross-examination techniques are powerful for designing, modifying, and developing new quality-of-life assessment tools for sub-population groups, whether with disabilities, health conditions, or other special needs. In-depth interviews further refine the “flaws” of each measure. These methodological procedures are easy to follow and can be replicated in other studies, especially in areas of health outcome assessment research.