Family Functioning, Pain, and the Trajectory of Quality of Life in Emerging Adults with a Physical Disability
With increasing numbers of individuals with spina bifida (SB) surviving into adulthood, it is important to measure and support their quality of life (QOL). However, there is limited understanding of how QOL may evolve over time (Sawin & Bellin, 2010). Informed by the Life Course Model for Spina Bifida (Thibadeau, Alriksson-Schmidt, & Zabel, 2010), this longitudinal study aimed to identify condition (SB severity, pain) and family functioning factors related to change in QOL among individuals with SB who are transitioning into adulthood.
Forty-eight individuals with SB completed a questionnaire comprised of health questions and standardized measures of QOL and family functioning at two time points (Time1 and Time2), 15 months apart. The World Health Organization QOL survey was administered as self-report index of domain-specific aspects of QOL (Physical Health, Psychological Health, Social, and Environment). Study staff performed a chart review to obtain SB clinical data.
Data were analyzed using a residualized change approach in which hierarchical regression models tested the statistical significance of independent variables (SB severity, pain, satisfaction with family functioning) in predicting Time2 QOL scores after controlling for Time1 scores.
At Time2, participants reported a mean age of 22.04 years (SD=2.16). A majority was Caucasian (77%), female (54%), unemployed (54%), and resided in supervised living settings (65%).
The combined effect of model variables explained a significant amount of change in Psychological Health-QOL(AdjR2=.49(F(2,42)=12.43,p<.001). After controlling for Time1 scores, greater SB severity (b=-.58,p=.03) and increased pain (b=-.30,p=.016) were predictive of decreased Psychological Health-QOL, whereas greater satisfaction with family functioning was associated with improved Psychological Health-QOL (b=.35,p<.001) at Time2.
The Physical Health-QOL model was also significant (AdjR2=.44(F(2,42)=9.99,p<.001), but only family satisfaction (b=.34,p=.007) was predictive.
In the Environment-QOL model (AdjR2=.32(F(2,42)=6.47,p<.001), a increase in family satisfaction was again associated with higher Environment-QOL at Time2 (b=.34,p=.027). The model predicting change in Social-QOL was non-significant.
Different patterns of associations between the Life Course variables and domain-specific aspects of QOL emerged. An increase in self-reported pain was associated with lower Physical Health-QOL and Psychological Health-QOL at Time2 and underscores the need for systematic screening for physical pain in this population. In contrast, a protective influence of family functioning was observed insofar as greater satisfaction with family functioning across time was associated with improved QOL in three of the four domains. Individuals with more severe cases of SB evidenced a greater decline in the Psychological Health-QOL domain at Time2.
Our findings are limited by the self-report questionnaires and small sample which restricted the number of variables entering the models. However, this study advances understanding of pathways (e.g., pain screening, enhanced family functioning) for social workers to support QOL in this vulnerable population.
Sawin, K. J., & Bellin, M. H. (2010). Quality of life in individuals with spina bifida: A research update. Developmental Disabilities Research Reviews, 16, 47-59.
Thibadeau, J, Alriksson-Schmidt, A, Zabel T. (2010). The National Spina Bifida Program transition initiative. Pediatric Clinics of North America, 57, 903-910.