What parents of children with asthma tell us.

INTRODUCTION: The family's contribution to effective asthma management is increasingly being recognized. This study gathered and analyzed information from parents about their greatest fears relative to having a child with asthma and identified information that parents believed was critical for providers to acknowledge. The methodology serves as a model for possible practitioner-directed action research with their care population. METHODS: Written information from 52 parents who attended focus groups comprise the data. Data were analyzed using constant comparative strategies. RESULTS: Common parental fears included uncertainty, long-term effects of medication, and concern that the condition would not go away or improve. Common themes parents wanted providers to know included the following: parents need more information; parents are scared and fearful; living with asthma is difficult, and this stress affects the parents' behavior; and parents know what is best for their child. Age trends were identified for fear themes only. DISCUSSION: Findings suggest parents can and should be asked about their greatest fears and concerns. Although developmental patterns may be used to initiate discussion, providers need to identify parents' unique concerns so they can integrate them in refining the child's asthma action plan.

Supporting development of children with chronic conditions: from compliance toward shared management.

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'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.

School-age children's understanding of the relations between their behavior and their asthma management.

This research examined the behaviors children reported to be linked to their asthma flare-ups, the extent to which reported links were in the theoretically expected direction, explanatory models children gave for linkages they espoused, and the extent to which reporting a greater number of theoretically appropriate linkages was associated with a variety of asthma-related beliefs and behaviors. Most children reported that their behavior had an affect on their breathing and most often the reported impact was in theoretically expected directions (73%-100%). The ability of children to provide substantive explanatory models was more limited. Significant relationships were found between the child's number of theoretically appropriate affirmative responses and several subsequent measures of asthma knowledge, extent of child's responsibility to implement daily asthma management by both parent and child report, child's self-efficacy rating on his or her ability to perform asthma self-management activities, and the child's report of frequency with which routine asthma management behaviors were performed.

Assessment of children's health status. Field test of new approaches.

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 less than .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.

The meaning of health to 9-, 10-, and 11-year-old children with chronic asthma.

Although many studies explore the meaning of illness and symptoms to children who have chronic illnesses, few examine the meaning of health. An analysis of interviews with 71 children, aged 9-11 years, with mild to severe asthma revealed that the most common criterion they used to judge their healthiness was the ability to be active. Activity and other physical/functional abilities accounted for 46% of all responses. Other positive affective qualities, such as being happy or joyful, accounted for another 27%. The absence of asthma-specific symptoms accounted for only 9% and of general illness symptoms 5% of the total responses.

Assessment of self-care agency in chronically ill adolescents.

This study evaluates the reliability and validity of the Denyes' instrument to measure self-care agency in adolescents and identifies significant correlates of agency in a sample of chronically ill adolescents. This descriptive cross-sectional study used a convenience sample of 51 adolescents having asthma, diabetes, and convulsive disorders. Internal consistency estimates of questionnaire factors ranged from alpha 0.65 to 0.87 except in one instance (attitude toward health, 0.17). Construct and concurrent validity were supported as self-care agency factors were significantly related to health practices and status. Of multiple demographic variables, only gender demonstrated significant correlations with any self-care factors, whereas gender and disease type displayed a significant interaction effect across three factors. Although assessment of factor stability remains, the Denyes' instrument appears to be a potentially useful research and clinical assessment tool to measure self-care agency in adolescents with a severe chronic illness.