Family Centered Care
originally published: mylifewithoutlimits.org – Medical Director’s desk
Therapeutic interventions directed toward the individual with cerebral palsy have been intensively studied and written about. While individualized therapies can be exceedingly helpful in enhancing mobility, communication, and productivity, they may fail if the “living environment” factor is ignored. The chief and most important environmental component supporting any therapeutic intervention is the family.
If family members are to be supportive, parents as well as siblings must be healthy — both mentally and physically. A strong predictor of caregivers’ well-being is family function.1 Caregiving demands, defined as the day-to-day practical needs of the child or adolescent with a disability, challenge the physical and psychological health of caregivers. In a study comparing the health of primary caregivers of children with cerebral palsy with that of the general population, researchers in Canada found that those who care for young people with a disability experience higher levels of stress and emotional difficulties as well as a greater number of chronic physical problems, such as headaches, stomach/intestinal ulcers, and musculoskeletal pain.2
In addition to the level of routine dependent needs (such as gastrostomy tube feedings, heavy equipment transport, or frequent medical appointments), a child’s challenging behaviors, if they exist, have been consistently shown to be a major source of parental stress.3 Although such difficult behaviors may be typically age-appropriate, they can be difficult for caregivers to interpret because of the child’s disability. For example, does a toddler with CP scream when buckled into a car seat because she is a toddler disliking being restrained or because confinement with spastic muscles is painful? Most likely the screaming is due simply to being a toddler rather than to pain. If that is true, the behavior needs to be dealt with in the most effective way as one would with any toddler – namely, ignoring it. It is the need for such constant judgment calls that can be very stressful for primary caregivers. Blackman and colleagues found that infants and toddlers with cerebral palsy and other disabilities may manifest the usual colic, temper tantrums, and irregular sleep patterns, but these typical age-related problems tend to be more severe and last longer than in other children.4
In differentiating the effect on a family of a teenager passing through adolescence with and without CP, Magill-Evans and co-researchers found more similarities than differences.5 Parents of children with CP should expect all of the usual, age-appropriate adolescent behavioral challenges. However, CP may complicate interpretation of an adolescent’s behavior. A knowledgeable counselor or therapist can be helpful in sorting this out and identifying effective behavior management strategies, when needed.
Navigating the complex health, educational, and social support systems are challenging and often change over time (e.g. from early intervention services to public schools, or from pediatric to adult healthcare). A parent may need to reduce work hours to be a “case-manager,” reducing family financial resources and placing health insurance coverage at risk – and thus, contributing to even more stress.
Family-centered care is both a philosophy and an approach to service delivery that is considered to be a best practice in early intervention, healthcare, and pediatric rehabilitation settings.6 It is, however, far from universally practiced. The concept is simple. The family is central in a child’s life and parents have the greatest insight into a child’s abilities and needs. The cornerstones of successful family-centered care are: open information exchange, respect and support for the family’s wishes and preferences, and a partnership between the family and service providers (rather than a dictatorial, “take-it-or-leave-it” approach). Not only does a family-centered approach to care result in higher satisfaction among parents, it improves outcomes for the child, parents, and entire family.6
In contrast to the simply technical or short-term rehabilitation interventions that are focused primarily on the child, family-centered care should explore strategies for prevention and reduction of family stress. This can be done through joint exploration of the sources of the stress and specific ways in which to deal with them (such as enlisting professionals who are well-versed in caring for individuals with disabilities to help with a child’s difficult behavior and/or identifying appropriate social, financial, religious, or physical support systems).1
Whether you are a parent, family member, primary caregiver, or individual with CP, you can and should request a family-centered approach to health, educational, and therapeutic services. The CanChild Centre for Childhood Disability Research at McMaster University in Hamilton, Ontario (Canada) has excellent information and resources on family-centered care. I particularly recommend the fact sheet entitled, “10 Things You Can Do to Be Family-Centered.” I believe you will find the information to be helpful and something you may want to share with your child’s services providers.
You can view CanChild’s compilation of information on family-centered care by going to their website. Click on the “Children & Families” tab; then select “Family-Centered Service.”
By introducing the concept of family-centered care into your service system, you may enhance the care experience not only for your own child and family, but for other children and families as well.
References
1. Raina P, O’Donnell M, Rosenbaum, P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115:e626-e636.
2. Brehaut JC, Kohen DE, Parminder R, et al. The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics 2004;114, e182-e191.
3. Ketelaar M, Voman MJM, Gorter JW, et al. Stress in parents of children with cerebral palsy: What sources of stress are we talking about? Child: Care, Health and Development 2008;34:825-829.
4. Blackman, J A, Cobb LS. A comparison of parents’ perceptions of common behavioral problems in developmentally at-risk and normal children. Children’s Health Care 1989;18:108-113, 1989.
5. Magill-Evans J, Darrah J, Pain K, et al. Are families with adolescents and young adults with cerebral palsy the same as other families? Developmental Medicine and Child Neurology 2001;43:466-472.
6. King S, Teplicky R, King G, et al. Family-centered service for children with cerebral palsy and their families: A review of the literature. Seminars in Pediatric Neurology2004;11:78-86.