Each stage of human development is characterized by a unique set of behaviors and emotional challenges: the terrible twos and temper tantrums, adolescence and rebellion, middle age and discontentment, the later years and loneliness. When these “normal” stages of development are coupled with individual temperamental differences and the occasional but inevitable environmental stressors, a range of dysfunctional responses – transient or chronic, inconsequential or debilitating – may result. This is baseline for everyone.
A motor impairment such as cerebral palsy — alone or in combination with associated intellectual, sensory, or other health impairments — may exacerbate life’s stressors and the challenges they pose to a person’s mental well-being. Early recognition and appropriate intervention may prevent or mitigate the possibility of a transient or inconsequential behavioral or emotional problem turning into something chronic and debilitating. Health professionals need to be attuned to the fact that for patients with disabilities — as for all of their patients — discussing/determining existing barriers to psychological well-being is a crucial component of a health examination.
Some time ago, as part of my clinical research as a developmental pediatrician, I surveyed parents of infants and toddlers with developmental disabilities, including cerebral palsy, to determine the frequency and level of parental concern about common behavioral problems (such as sleep difficulties, temper tantrums, and excessive crying). Parents of children with disabilities reported a larger number of problems during the first year of life, that the problems persisted longer, and that the parents were more concerned about these occurrences than were parents of very young children without disabilities. (1)
From infancy onward, aspects of the mental well-being picture for some people with cerebral palsy is significant. Recently, a researcher in Iceland studied the behavioral and emotional symptoms of preschool children with cerebral palsy. She found elevated rates of problems with attention, withdrawal, aggressiveness, anxiety, and depression compared to a group of similar-aged children who did not have cerebral palsy. (2)
In a cross-sectional study of school-aged children with cerebral palsy in several European countries Parkes and colleagues found a significant proportion of the children displayed psychological symptoms or social impairments severe enough to warrant referral to specialist mental health services. (3)
In a Canadian national study conducted by Stevens and others, adolescents (aged 11-16) with physical disabilities were compared to their non-physically-disabled peers on a set of life-satisfaction criteria. The teens with disabilities reported good self-esteem, strong family relationships, and as many close friends as the other adolescents in the national sample. However, study results indicated that adolescents with physical disabilities participated in fewer social activities and had fewer close relationships with their friends, but that they had more positive attitudes toward school, teachers, and their fellow classmates. (4)
The transition to adulthood is challenging for all adolescents. Navigating transitions to independent living, post-secondary education or training, employment, and the acquisition of social relationships beyond the school setting are inherently stressful. Restricted gross motor functioning that may limit daily activities and social participation can impose additional challenges for young adults with cerebral palsy. (5)
In middle schoolers and adolescents, one of the biggest threats to self-esteem and happiness is “bullying.” Michael Kutcher, twin brother of actor Ashton, recently received a prestigious award from the American Academy for Cerebral Palsy and Developmental Medicine in recognition for his advocacy (on Capitol Hill) for more funding for cerebral palsy research. In his acceptance speech, Michael spoke about growing up with cerebral palsy. He identified bullying (mostly verbal) as a major unpleasantness in his life as an adolescent. Fortunately, his brother often came to his rescue — many children are not so fortunate. School personnel and parents may not be aware of this common but often subtle agony. Bullying is, by no means, limited to the physically disabled, but it does occur regularly and can cause great anguish. It is a factor that should be assessed as part of a health examination for all in this age group.
In a review of the health and well-being research literature concerning adults with cerebral palsy, Dr. Gregory Liptak reported that they have a lower rate of participation than the overall population in areas such as social interactions, employment, marriage, and independent living. (6) He stated that this may result in high levels of loneliness and resultant depression. Very few studies have identified interventions that will help physically disabled adults achieve optimal health and well-being, although perhaps several are self-evident: maintaining mobility, community access, and adult support services. More studies concerning physically disabled adults and mental well-being are needed.
Finally, apart from the challenges to sound mental health among individuals with cerebral palsy, there is an impact on family function as well. Parents of a child with cerebral palsy face a range of stressors depending on their child’s age, development, and functioning. At the time of initial diagnosis, parents typically grieve when confronted with the fact that their child is not developing normally and life will present ongoing struggles for them and their child. In the second phase, parents experience the desire to help their child function as normally as possible. They seek appropriate support services as the child’s needs change, including the transition from home to independent adult-living settings. (7) The trend towards family-focused, rather than simply technical or short-term rehabilitation and interventions focused only on the child, have improved outcomes and reduced family stress. (8)
At each stage of life for an individual with cerebral palsy (as for everyone) there are challenges to mental well-being. Awareness of these challenges and sensitivity to the signs of anxiety and depression, including: externalizing behaviors (e.g. aggressiveness, hyperactivity, non-compliance), and/or their opposite, internalizing behaviors (e.g. social withdrawal, passivity, fearfulness) provide opportunity for early intervention and remediation. Comprehensive care must include mental health surveillance and support in addition to traditional medical, physical, and educational care.
1. Blackman JA, Cobb LS. A comparison of parents’ perceptions of common behavior problems in developmentally at-risk and normal children. Children’s Health Care 1989;18(2):108-113.
2. Sigurdardottir S, Indredavik MS, Eiriksdottir A, et al. Behavioural and emotional symptoms of preschool children with cerebral palsy: A population study. Developmental Medicine and Child Neurology 2012;52:1056-1061.
3. Parkes J, White-Koning M, O Dickinson H, et al. Psychological problems in children with cerebral palsy: A cross-sectional European study. Journal of Child Psychology and Psychiatry 2008;49(4):405-413.
4. Stevens SE, Steele CA, Jutai JW, et al. Adolescents with physical disabilities: Some aspects of health. Journal of Adolescent Health 1996;19(2):157-164.
5. Donkervoort M, Roebroeck M, Wiegerink D, et al. Determinants of functioning of adolescents and young adults with cerebral palsy. Disability and Rehabilitation 2007;29(6):453-463.
6. Liptak GS. Health and well being of adults with cerebral palsy. Current Opinion in Neurology 2008;21:136-142.
7. Rentinck ICM, Ketelaar M, Jongmans MJ, et al. Parents of children with cerebral pasly: A review of factors related to the process of adaptation. Child: Care, Health and Development 2006;33(2):161-169.
8. Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115(6):e626-e636.