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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&apos;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&apos;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&apos;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&apos;s unique wishes., The 2001 National Survey of Children with Special Health Care Needs estimates 13% of children in the United States live with special health care needs (Child and Adolescent Health Measurement [...]

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. Keywords: parent focus groups; cultural competence; chronic illness; special health care needs

Abstract: Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be [...]

Children with chronic conditions can meet the overall health outcomes articulated in Bright Futures (1994), a model outlining a continuum of social, developmental, and health outcome achievements that help shape an independent, healthy adult. These outcomes begin with the development of a therapeutic alliance between families and providers and end with an independent, healthy functioning adult. The achievement of these outcomes does not come without the support of providers, however. Health care providers ideally merge multiple models of practice to provide an anticipatory guidance approach throughout the child&apos;s life to assist the family in this important task. Three models have been found useful: developmental, leadership, and changing foci, which families can merge into every day life., Alex has asthma. When he was 2 years old, his parents monitored his activity and medications and assisted him with skills such as self-feeding, dressing, and toileting. By age 6 [...]

The goal of this study was to describe sleep patterns and accomplishment of daily life habits in children with Down syndrome (DS) and to investigate the relationship between subjective indicators of sleep disturbance with functional outcomes in daily life.

The assessment of children's health status presents unique difficulties. These include parent-child differences in reports of functioning, knowledge of what constitutes age-appropriate functioning, obtainment of accurate information for child, and demonstration of the predictivity of health status measures. Recent measures (the Functional Status II-R and instruments from the RAND Health Insurance Experiment) address physical, social, and psychologic domains of children's health. The authors modified these instruments to develop short (7 and 14 items) questionnaires (RAND, FSQ) to assess child health. Scoring on these questionnaires was compared with traditional measures of illness severity and medical service utilization. The authors also evaluated coding illness-specific and general health limitations (FSQ-S and FSQ-G, respectively). Patients included the parents of 113 children with chronic illness (100 asthmatics). Measure stability was evaluated over a 6-month period in a subset of patients. Internal consistency (Cronbach's alpha) of the seven-item RAND measure was .78, the FSQ-S .78, and the FSQ-G .73 to .89 during repeated samplings over 6 months. The FSQ-S and Rand seven-item measure were moderately correlated (.47, P<.001). The authors observed significant correlations among alternate codings of the FSQ and RAND and between the FSQ-S, FSQ-G, RAND, and severity measure with traditional indices of medical service utilization. Parents were more likely to attribute certain functional status problems (e.g., being tired) to illness than they were other problems (e.g., moodiness or interest in things). The findings demonstrate that these measures have acceptable psychometric properties and provide preliminary evidence of construct validity in a group of young children with asthma. Using general and specific measures will provide differing pictures of a child's functioning. No single measure completely taps the impact of illness as measured by a panel of traditional indicators of illness burden and medical service utilization.