A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions.

To test the 6-month efficacy of an inclusive non-diagnosis-specific, 7-session parent education curriculum on five pre-specified outcomes. A randomized clinical trial with 100 parents having children 2-11 years with a variety of chronic conditions was conducted. The 7-session curriculum, Building on Family Strengths (BFS), was created by an interdisciplinary pediatric team as a derivative of a successful adult chronic disease self-Management program distributed by Stanford University Patient and Education Research Center. Despite no differences at baseline, intervention participants had higher scores on self-efficacy to manage the child's condition (p = 0.049), coping with childhood chronic illness (p < 0.001), parent-child shared management of the condition (p = 0.097), family quality of life (p = 0.010), and, lower scores on a measure of depressive symptoms (p = 0.046) at the 6-month end-point. Average effect-sizes were modest across outcomes (7-11% improvement) with intervention participants having baseline scores in the least favorable quartile improving the most (12-41%). This research provides evidence that the BFS curriculum can yield significant improvements across five important outcomes for parents of children with various chronic conditions. Parent education programs should be offered especially to parents of children with chronic health conditions, regardless of the type of condition, who lack adequate support. These programs can help parents cope with and manage their children's chronic conditions more effectively.

Measuring parent-child shared management of chronic illness.

UNLABELLED: Over time, most children with special health needs must become partners in their disorder management. Because most care of chronic conditions takes place in the home, parents assume significant responsibility in starting and supporting the child's role in parent-child shared management over time. This article describes findings from analysis of one attempt to measure this important construct. METHODS: Cross-sectional descriptive study with 129 parents of children with chronic conditions. RESULTS: Internal consistency of the shared management scale was adequate (Cronbach's Alpha: overall scale, 0.91; and subscales: desire, 0.79; knowledge, 0.76; and current actions, 0.86). Observed relationships were in theoretically expected directions. In unadjusted univariate analyses, there were statistically significant associations between parent-child shared management and each of the following variables: (a) condition grouping and severity, (b) parent self-efficacy and coping, (c) amount and frequency of child's limitation to do things, and (d) emergency visits in the past 6 months (all at p < 0.01 levels). Adjusted multivariable analysis retained condition severity, parent self-efficacy, and coping as significant factors. CONCLUSIONS: The parent-child shared management tool can be used in research to broaden understanding of this important construct and identify precursors and outcomes of high or low shared management in a family. Nurses might use the tool in clinical practice to more accurately gauge parent desire for, knowledge of, and current actions in support of parent-child shared management so interventions can be individualized to the family's unique wishes.

Parent and community participation in program design.

Parents of children with chronic illnesses face many challenges not faced by other parents. A family-centered parent support and education program, Building on Family Strengths (BFS), was designed to help parents meet these challenges by gaining new skills and learning new ways to support their children. BFS researchers involved potential participant families in the refinement of the BFS curriculum to make it truly family centered. The article reports major feedback received from parent focus groups, leaders in several cultural communities, and participants in a pilot class as BFS underwent final refinement. This feedback greatly influences the development of the BFS curriculum, as without it the final product going into a randomized clinical trial would be less attuned to the needs of parents of children with chronic illnesses. Other researchers and family educators may find this feedback useful as they improve their own research and program offerings.

Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships.

When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their child's chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their child's care. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculum's effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for one's self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.