Parental intervention is critical to the welfare of children who possess Cerebral Palsy. Not only is parental attention important to these children, but parents also are advocates for services for their children that are meaningful and assist in developing functional life skills leading to higher levels of independence. In addition to this, parents provide essential information to psychologists, teachers, and other professionals in the assessment process (Griffin, Fitch, Griffin, 2002).
The needs of children with Cerebral Palsy vary greatly, ranging from behavioral problems to mobility and cognitive issues. Often, parents feel they are unable to have their own social relationships due to the time they spend managing their child’s disability and needs (Sipal, Schuengel, Voorman, Van Eck, and Becher, 2010).
It is common for parents to feel that having a child with Cerebral Palsy influences their quality of life due to the stress that comes raising a child with this disability.Common stresses for parents of children with Cerebral Palsy are:
- Physical health
- Disrupted sleep
- Difficulty in maintaining social relationships
- Pressure on marital relationships
- Difficulty in taking family holidays
- Limited freedom
- Limited time
- A child's long-term dependence
- Difficulty in maintaining maternal employment
- Financial burden
- Difficulty in accessing funding
- Insufficient support from services
All of the above factors contribute to causing a lot of stress for parents who do not have the proper support or knowledge to help their children. Because of this, parents and health professionals must collaborate to identify needs and co-ordinate services. Individual family needs depend on whether their child/youth with CP is self-sufficient or requires physical assistance and assistive technology for mobility.
The following are needs that are common among parents and families of children with Cerebral Palsy:
- The need of information, supports, community services and financial help (highest among parents of children/youth who use wheeled mobility)
- Needs for information about current and future services
- Help with planning for the future
- Help in locating community activities
- Parent need to have more personal time
(Over 50% of parents of children and youth with CP expressed needs for information about current and future services, planning for the future, help in locating community activities and the need to have more personal time).
The best way for parents to cope with these problems is to utilize a family-centered approach in which services build on the strengths of children, youth, families and communities (Palisano, Almarsi, Chiarello, Orlin, Bagley, and Maggs, 2010).
