Title: Building on Family Strengths: Parent Education for Families with Special Needs Kids
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Section/SPIG: Maternal and Child Health
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The 2001 National Children with Special Health Care Needs (CSHCN) Survey reported that 12.8 percent of America’s children have special needs. Comprehensive care management for these children is an essential part of health care, improving outcomes, and lowering long-term costs of care (Starfield & Shi, 2004). Parents are the primary care providers and experts on day-to-day management of their child‘s condition, while health professionals may have disease-specific expertise, and children have the potential to contribute to the long-term management of the condition.
The family’s ability to manage the child’s illness has been shown to improve maternal emotional health (Ireys, Chernoff, DeVet & Kim, 2001), but to effectively cope and master management over the years, parents must view their role in chronic illness management within the larger context of their developing family life. The family’s ability to change their focus from the chronic illness and medical needs during specific times of crisis to maintenance of normative goals and community involvement during times of stability is critical to effective management of the illness, its emotional consequences, and achievement of desired quality of life. (Kieckhefer & Trahms, 2000; Broome, Knafl, Pridham & Feetham, 1998; Gustafsson, Bjorkstein & Kjellman, 1994; Knafl, Breitmayer, Gallo & Zoller, 1996). In addition, drawing the child into developmentally appropriate management activities with the parent can help move the family forward toward reaching their long-term family goals.
Specialty medical clinics teach illness-specific care techniques and provide illness-specific support groups, but it is rare for these clinics to address the management of a child’s illness in the context of family life (Knafl, et al., 1996), managing parents’ own reactions and emotions (Whyte, Baggaley, & Rutter, 1995), or educating their child over time to become developmentally appropriate partners in shared management of the chronic condition (Austin, 1990; Kieckhefer & Ratcliffe, 2000; Knafl et al., 1996; Thomas, 1987). Families who can acquire these skills can affect the child’s long-term care, and have the potential to develop positive life long illness management behaviors in their child regardless of the specific illness. Balance and flexibility can be fostered through interactions with other parents who have children with chronic illnesses when they openly share concerns, issues and successful strategies. Few programs, however, have been created and formally tested to see if they can help families achieve these important goals.
One interdisciplinary research project in Seattle, funded by the Agency for Healthcare Research and Quality (Grant No 5 R01 HS013384-02), is attempting to address this need by testing a parent education program, titled Building on Family Strengths, for parents of children with ongoing health needs. The seven-session class is offered jointly by the Center for Children with Special Needs of Children’s Hospital & Regional Medical Center and the School of Nursing and Center for Human Health and Disability at the University of Washington.
The essence of this project was founded on the principle of family-centered care. To insure the quality, effectiveness, applicability and success of the project, families were and continue to be involved at every level of the research project, including roles as consultants, focus groups, pilot participants, facilitators and Co-Investigator. These roles have contributed to the original concept formation, grant application, curriculum development, implementation processes and evaluation approaches. To learn more about the involvement of families in this research, view slides from a recent presentation: <http://cshcn.org/presentations/FamilyInvolvementResearch.htm>.
The Building on Family Strengths curriculum offers parents the opportunity to learn new ways of coping and managing family activities impacted by the illness. This includes: skills to work with health and school systems, ways to involve their child in his or her own care, tips to achieve difficult goals, and a safe place to share how their child's health impacts them, their parenting and their family. Learn more about the project at <www.familystrengths.org>. We look forward to sharing results of the evaluation at a later date.