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When expecting a child, parents envision the life their child will lead – a life of joy and fulfillment; a life with friends, play and fun. Upon receiving their child’s diagnosis of Cerebral Palsy, parents question what quality of life their child will have. Studies confirm that children with Cerebral Palsy often report a quality of life on par with that reported by children without disability. Parents, however, perceive differently.
Making life joyful and fulfilling
A life of joy and fulfillment means being surrounded by supportive family and friends, being engaged in life-enhancing interests and activities, and being safe and secure. A quality life is one that includes economic security, personal safety, health and mental well-being, and freedom with independence.
For individuals with Cerebral Palsy, a quality of life is defined in the same manner. Studies confirm that children with Cerebral Palsy often report a quality of life on par with that reported by children without disability. Parents, however, perceive differently.
The World Health Organization looks at four major categories when evaluating quality of life:
- Physical health and independence – energy and fatigue, pain and discomfort, sleep and rest, mobility, dependence, and productivity. Ability to self-care, earn an income, and perform activities of daily living.
- Psychological well-being, spirituality and personal beliefs – self-perception, self-image, and self-esteem. Cognitive ability to think, learn, remember and concentrate. Influence of religious beliefs, spirituality and personal beliefs.
- Social relationships – relationships with others, socialization and sexual activity.
- Environmental factors – safety, security, housing, mobility, freedoms and independence. Access, inclusion, and participation. Opportunities to learn, develop skills, participate in recreation, leisure interests and employment.
Quality of life is increasingly recognized as a major factor in determining a person’s health and well-being. Those who report satisfaction with their quality of life often are healthier and have a longer life expectancy. They have the support of family and loved ones and take part in activities that they enjoy. They are able to set future goals for themselves, such as attending college, getting married, and having a family.
The reverse is also true. Those reporting a level of dissatisfaction in their quality of life, often have health problems and live shorter and less fulfilling lives. They are not able to pursue life goals or obtain self-actualization.
Factors affecting quality of life
Many factors can affect the quality of life for children and adults with Cerebral Palsy. Two key factors are the level of pain experienced by people with Cerebral Palsy and the stress and depression felt by parents and family members.
Pain is cited as the number one determinant in studies assessing the quality of life for children and adults with Cerebral Palsy. Children who reported pain tended to have lower quality of life in all areas, including physical well-being, moods and emotion, self-perception, autonomy, relationships with parents, and school environment.
Pain can affect every part of the bodies of children with Cerebral Palsy. Common complaints include hip and back pain associated with spasticity and osteoarthritis. Pain can often interfere with sleep, and people with Cerebral Palsy report that sleep disturbance is a common problem.
Assisted stretching, range of motion activities, and needle injection are all common sources of pain experienced by children and adults with Cerebral Palsy. What is not clear, and what must be studied more in-depth, is that children who report a poor quality of life might perceive pain differently or might report emotional distress as physical pain.
Parents with higher levels of stress are more likely to report a poorer quality of life for their children with Cerebral Palsy. Parental stress needs to be taken into account both in research, as this affects parents’ report of their child’s quality of life, and in practice. Paying attention to the well-being of parents could be one factor in promoting a better quality of life for children.
Children with Cerebral Palsy report a higher quality of life when two factors are present: the impairment is incorporated into their sense of self from birth and their lives are similar to the lives of most other children.
Participation is one key to having an excellent quality of life. Children love to play and interact with their peers; children enjoy taking part in sports and helping the teacher in the classroom. For a myriad of reasons, children with Cerebral Palsy often participate much less than the general population, particularly children with more severe forms of impairment. It is important to include both children and adults with Cerebral Palsy in all aspects of life in order to promote a good quality of life.
SPARCLE: An in-depth look at children with Cerebral Palsy
SPARCLE – Study of Participation of Children with Cerebral Palsy Living in Europe – reports the quality of life of children with Cerebral Palsy living in Europe in two parts. SPARCLE 1 ran from 2004 to 2005, assessing the quality of life of children with Cerebral Palsy ages 8 to 12 years. SPARCLE 2 started in January 2009; the same children, now ages 13 to 17, are being reassessed for their quality of life.
Among children with Cerebral Palsy who self-report, the quality of life is similar to that of children in the general population, except for in the area of school environment. However, parents with higher levels of stress are more likely to report a poorer quality of life for their child.
SPARCLE found four specific impairments are associated with poorer quality of life – decreased walking ability is associated with poorer physical well-being, decreased intellectual impairment (a reported IQ 70 or below) correlates with poorer moods and emotions and less feeling of autonomy, and speech difficulties can result in more difficult relationships with parents.
The results of SPARCLE invite in-depth discussion in a variety of areas, including the importance of pain in association in assessing the quality of life in children with Cerebral Palsy; how children, parents, and professionals all have different perspectives; and the need to take parental stress in account both in research and practice.
Although SPARCLE focuses on children in European countries, the findings can be applied internationally; it appears that a similar study of children with Cerebral Palsy of this breadth and scope in the United States has not yet been done.
Finally, SPARCLE holds important clues and keys to possibly enhancing the quality of life for adults with Cerebral Palsy, because if such factors as pain and parental stress levels are addressed early on, the quality of life in adulthood could be increased.
Ways to enhance quality of life
There are many ways to enhance the quality of life for children and adults with disabilities, including managing and controlling pain, maximizing independence, enhancing social and peer interactions, and augmenting communication and learning potential.
Certain medications, including anticholinergics, or muscle relaxers, to reduce spasticity; and anti-inflammatories to aid in pain management, are given to children and adults with Cerebral Palsy. Some forms of Cerebral Palsy where anticholinergics are prescribed are chorea, in which the person experiences jerky, involuntary, irregular, and uncontrollable movements; and dystonia, which is characterized by prolonged and involuntary contractions.
Optimizing communication of children with cerebral can enhance both the child’s quality of life and their relationship with parents. Eleven-year-old Lianna Bryant has a severe case of mixed Cerebral Palsy and quadriplegia, and is essentially non-verbal. Originally, Lianna communicated with her eyes and through head movements.
But Lianna and her mother, Utawana Leap, wanted to maximize the little girl’s communication and thus enhance her quality of life. Lianna received the Tobii C12 assistive and augmentative communication device in 2009. This allows her to communicate with a part of her body that she can completely control – her eyes. She selects from programmed words and phrases, taking time to reply and to send e-mails out to others.
Personal care assistants can offer an independent life that might not otherwise be achieved by people with Cerebral Palsy. Depending on the extent of the impairment and tasks that individuals and caregivers are able to perform, the range of services offered by PCAs varies by person-to-person. Services depend on an individual’s personal, medical, employment, communicative, cognitive, and emotional needs.
With planning, strong family support, and a good sense of self, people with Cerebral Palsy can expect to achieve and maintain a high quality of life on par with their more able-bodied peers – a life including fulfillment and achievement.