The public health of disabilities : functional independence, health-related quality of life, and parental stress in adolescents with disabilities

Background/Objectives: To investigate the null hypotheses that no correlation exists between functional independence, health related quality of life, and parental stress Design: Baseline cross-sectional analysis of a population Participants and Setting: Participants were recruited from camps, wheelchair sports, and disability-related meetings. They are 10-21 years old with disabilities, in school for the prior year, understand English, and demonstrate necessary cognitive comprehension. We enrolled 72 youths, with 39 completing all components. There were 39 males and 33 females. Fifty six subjects self-identified as Caucasian. Six were African American, 5 were Hispanic, 2 were Asian, and 3 self-identified as “other.” The range of diagnoses included cerebral palsy, spina bifida, orthopedic or neuromuscular conditions, and developmental or cognitive conditions. Materials/Methods: The Functional Independence Measure (FIM) was given by structured interview. Dr. Leger trained and observed interviewers for inter-rater reliability. Adolescent health-related quality of life (HRQOL) was determined by a modified version of Parkin’s (1997) instrument for spina bifida. Parental stress was evaluated by the Stress Index for Parents of Adolescents by Sheras, Abidin, & Konold. Results include Adolescent Domain, Parent Domain, and Adolescent-Parent Relationship Domain score. Data was analyzed with SPSS 13.0. Central tendencies and bi-variate correlations were conducted using two-tailed Spearman’s rank correlation with a significance value of α ≤ 0.05. Small correlations had a coefficient of 0.10 to 0.29, medium was 0.30 to 0.49, and large was 0.50 to 1.00. Results: Statistical power was not fully reached, yet a near significant correlation exists between FIM score and either the Parental Domain of the SIPA (r= -0.243, N= 52, p= 0.082) or the Adolescent Domain (r= 0.256, N= 52, p= 0.067). These correlations are stronger for the physical components of the FIM (r= -0.320, N= 52, p= 0.021; and r= 0.377, N= 52, p= 0.006 respectively). The motor FIM correlates with HRQOL (r= 0.358, N= 48, p= 0.012). HRQOL correlates with the Adolescent-Parent Relationship Domain (r= -0.295, N= 41, p= 0.061). Conclusions/Significance: As physical independence increases, an adolescent has higher health-related quality of life, and parents have less stress from the parenting role. This is associated with more parental stress due to the child’s behavior, though. With less stress in the adolescent-parent relationship, there is a trend towards increased quality of life. (UCHC IRB # 05-028