Social Integration, Intimate Relationships Play Big Role in Improving Cerebral Palsy Patients’ Quality of Life

Social integration and sexuality education programs should be developed to improve the quality of life of adults with cerebral palsy who do not have an intellectual disability, a new study shows.

The study, titled “Quality of life as assessed by adults with cerebral palsy,” was published in the journal PlosOne.

Quality of life (QoL) is a relatively new parameter in health evaluation, but is becoming an increasingly important one. Most of the scientific community agrees that QoL requires the fulfillment of eight basic needs: emotional, economic, and physical well-being, interpersonal relationships, personal development, self-determination, social inclusion, and rights.

Many studies have evaluated the QoL of young people and children with cerebral palsy. However, few studies have analyzed the quality of life of adults with this condition.

Researchers in Spain set out to determine the relevant socio-demographic factors and predictors for QoL in adults with cerebral palsy who do not have an intellectual disability.

To measure QoL researchers use the GENCAT Quality of Life Scale, which evaluates QoL through 69 items, all expressed in the third person in declarative format and answered using a 4-point scale.

A data collection sheet and the GENCAT scale were self-administered by all participants, as researchers considered that independent completion of information ensured a higher level of accuracy and truthfulness, simultaneously promoting patients’ rights and freedom of expression as individuals.

A total of 75 adults with cerebral palsy, all members of the National Cerebral Palsy Association of Spain, participated in the study.

Results showed that the overall mean score indicator of participants’ quality of life was 103.29, which corresponds to the 56.6th percentile on the GENCAT scale.

Among the items that scored the lowest were “has a satisfactory sexual life” and “presents with depression symptoms.” The highest-scored items were “has good personal hygiene” and “reports feeling loved by the most important people to him or her.”

The study found that patients with a university education obtained higher QoL scores than those with less education. Additionally, having a partner was also related to a higher QoL score.

Further statistical analysis showed that maintaining sexual relationships was another factor that increased participants’ QoL. This led the authors to suggest that, “it is important to encourage sexual education among adults with CP and adapt existing social inclusion programs to increase their QoL.”

Overall, it was found that, ”interpersonal relationships,” “personal development,” and “social inclusion” were the most important factors for QoL, whereas “material wellbeing” and “physical wellbeing” were the least.

“This study highlights the importance of social and romantic relationships to achieve a better quality of life in adults with cerebral palsy who do not have an intellectual disability,” the authors conclude.