Volitional nonadherence in pediatric asthma: parental report of motivating factors.

Volitional nonadherence is thought to be common among patients with chronic health conditions, including pediatric asthma. To date, no data have been published on the extent to which, and reasons why, families purposefully adjust their child's asthma regimen. This study provides descriptive data for parental report of volitional nonadherence in a sample of 101 children (ages 1-17 years) with asthma. Families tended to decrease rather than increase use of controller medication, but were more likely to increase rather than decrease preventive medication. Motivating factors for increasing medications centered around achieving better symptom control, whereas reasons for decreasing medications involved a perception of less need (ie, asthma was better) and desire to reduce treatment burden. Our results suggest it is important to better understand volitional nonadherence so that behavioral interventions aimed at promoting adherence and health outcome can be more effective.

Social perceptions and preferences of youth with asthma.

Peers are a primary source of psychosocial support in youth. Chronic disease such as asthma can make youth feel different and impinge on their adherence to treatment. We investigated factors that make the asthmatic adolescent feel different from peers, and explore their willingness to belong to a peer social-group such as an asthma club. Sixty-six youth (ages 8-18 years) with asthma completed an anonymous questionnaire that included both multiple-choice and open-ended questions designed to explore the feelings of the respondents. Almost one-third of our sample reported negative feelings regarding their asthma. Nearly 27% reported that their diagnosis made them feel different from their healthy peers, while over 25% admitted feeling uncomfortable using their inhaler in front of their friends. Almost one-half of adolescents felt restricted or excluded from school activities, athletics, or social clubs. While most respondents (93.9%)

Adherence in young children with asthma.

PURPOSE OF REVIEW: To discuss the unique challenges of managing asthma in young children and to review the literature over the past year with regard to regimen adherence in this relatively understudied population. RECENT FINDINGS: Young children and their families face unique challenges in dealing with asthma and these have the potential to affect regimen adherence. They include the time and effort required by asthma-management activities (e.g. nebulizer use), dependency on parents for asthma care, and the limited ability of children to communicate about their symptoms. Five published studies were found for the past year. They covered three areas: adherence assessment (e.g. electronic monitoring versus diary cards), device impact on adherence (e.g. influence of the novelty of medication-delivery device), and adherence interventions (e.g. parental education regarding symptoms). SUMMARY: Research suggests that several components need to be considered when designing interventions to improve adherence for young children with asthma: to consider the strain in the caregiver role when developing the treatment regimen, to provide devices that parents and children can use, to monitor adherence with electronic monitoring, and to address parents' concerns and perceptions about treating prodromal symptoms of an asthma exacerbation. Because many parents are hesitant to treat cough symptoms, an additional training component may need to be added to address this concern.

Child and caregiver psychosocial functioning in pediatric immunodeficiency disorders.

BACKGROUND: Children with chronic illness have been found to be at an increased risk of behavioral and emotional difficulties. To date, children with pediatric immunodeficiency disorders (PIDDs) and their families have not been the focus of extensive published psychosocial research. OBJECTIVE: To determine if children with PIDDs and their caregivers have altered psychosocial function and whether the severity of the PIDD was associated with such difficulties. METHODS: Twenty children with PIDDs and 20 children with asthma were recruited for this study. Children and their caregivers completed various psychosocial questionnaire forms. Responses were compared with normative data for the appropriate measure and with other variables. RESULTS: Higher frequencies of children with PIDDs were found to have a number of elevated psychosocial concerns when contrasted with normative data, particularly from parent report. These concerns included depression, anxiety, somatization, social withdrawal, and social skills. The severity of the PIDDs was significantly associated with a number of behavioral adjustment issues, including receiving psychiatric diagnoses and special education services. Although children with PIDDs had significantly more psychiatric diagnoses than did asthmatic children, these groups did not differ significantly on questionnaire scores regarding child or caregiver psychosocial adjustment. CONCLUSIONS: Children with PIDDs have significant behavioral problems. Children receiving intravenous immunoglobulin or immunomodulatory treatments were reported to have more problems than children not receiving them. This study highlights the need for further research in psychosocial functioning of children with PIDDs in an effort to develop interventions to promote their overall adjustment.

Pediatric asthma: a look at adherence from the patient and family perspective.

Although extensive research has been done in an effort to understand and promote adherence in pediatric asthma, little progress has been made in reducing the prevalence of nonadherence. Some researchers argue that a paradigm shift is necessary to advance the adherence field. Despite the recent trend for increasing the role of families in determining treatment plans, a patient-centered approach has been lacking in adherence to a daily regimen. It is clear that, although patients and families show evidence of inadvertent nonadherence (eg, forgetfulness), they also engage in volitional or intentional nonadherence, via reasoned and purposeful decisions. Patients conduct "experiments" with their regimen components in an effort to balance the burden of disease with the burden of treatment. These experiments typically involve some degree of nonadherence. Perhaps, if researchers strive to better understand the decision-making process involved in these experiments, health care providers can guide families in making adherence decisions that would lead to attainment of treatment goals, improvement in quality of life, and realization of positive clinical outcomes.

Assessing the relationship between locus of control and social competence in pediatric burn survivors attending summer cAMP.

Previous research suggests that children with burn injuries often exhibit psychological and social difficulties. The areas of functioning that are affected most often include level of anxiety, social competence, and self-esteem. Those children having an internal locus of control (LOC) have been shown to react more positively to physical disorders and to have better psychological responding in nonburn populations. The purpose of this study was to determine whether there is a relationship between LOC and social competence in pediatric burn survivors. Participants were children aged 8 to 18 years who had been treated for a burn injury and attended a 1-week summer camp for pediatric burn survivors. Results indicated that the type of LOC was not a predictor of the overall level of social competence, as reported on three different measures of social competence. However, LOC significantly accounted for variability in the child's cooperation level, according to parent report. Other results are discussed, as well as implications for future research and clinical work in this area.

Validation of the Perkins Adolescent Risk Screen (PARS).

PURPOSE: To examine the initial psychometric properties for the PARS, a brief interview used to screen for 16 items of adolescent risk and protective factors. METHODS: Participants included 193 adolescents, attending public middle and high schools or a university-based Adolescent Clinic. Participants completed a PARS interview, as well as a battery of questionnaires. Approximately 31% of participants received a second PARS interview from an independent rater to assess inter-rater consistency. RESULTS: Descriptive statistics revealed that participants, on average, were rated as low to moderate risk for health-related difficulties across all PARS items. Descriptive statistics also showed important risk patterns in this sample of adolescents (e.g., 1/5 of sample not exercising at all). Factor analysis yielded a total of five factors (Risk Factors, Protection Factors, Relationships/Mood, Motivation Issues, Weight Issues), accounting for 58% of the variance in PARS item scores. Satisfactory levels of internal consistency and inter-rater agreement for the PARS score were found. Convergent and divergent validity of PARS scores were supported by correlations obtained with similar and dissimilar measures, respectively. A significant age group difference was obtained in the total PARS score, with adolescents aged 17-19 years obtaining higher scores than did adolescents aged 14-16 years. No significant gender differences were found. CONCLUSIONS: Our results support the initial psychometric properties (i.e., reliability, validity) of the PARS as a measure of health risk and protective factors in adolescents. The PARS is a brief, efficient means of obtaining important health risk information from adolescents throughout periodic routine health care visits.

Providing dust mite-proof covers improves adherence to dust mite control measures in children with mite allergy and asthma.

INTRODUCTION: The most critical dust mite avoidance technique for asthmatic children with mite allergy is the use of dust mite-proof bedding covers. Adherence to allergen control measures is poor due to cost. The purpose of this study was to determine whether giving families mite-proof bedding encasings at the time of the diagnosis with mite allergy would improve adherence at a home visit 2 months later. METHODS: Parents of children (mean age 7.7 years) with asthma and positive skin tests for dust mite were assigned either to an intervention group, which received dust mite covers upon enrollment or a comparison group, which did not. Both groups were instructed in dust mite control measures by a medical provider and told to invest in the covers as part of standard care. Two months after enrollment, parent report and observational measures from each family were obtained during a home visit. RESULTS: The group provided allergen encasings was found to be significantly more likely to have used the casings at the home visit, t(22) = 2.77, P < 0.05. There were no differences between groups in adherence to other mite control strategies. Parenting stress was significantly related to poorer mite control compliance. The most common reason reported for nonadherence to control measures was cost. CONCLUSIONS: Providing mite bedding encasings at the time of diagnosis significantly increases compliance at a 2-month home visit. Medicaid and insurance companies should be encouraged to pay for casings as a cost effective measure to improve asthma care in children with mite allergy.

Living with a chronic illness: a measure of social functioning for children and adolescents.

OBJECTIVE: To describe the development and initial psychometric evaluation of a measure of social functioning in children and adolescents with chronic medical conditions, Living with a Chronic Illness (LCI), designed to distinguish social difficulties related to the illness from those social difficulties associated with other factors (e.g., limited income). METHODS: Parents (n = 108) and youths (n = 115) completed the LCI, along with other psychological measures (e.g., Youth Self-Report). Teachers completed the Teacher Report Form and provided grade and absence data. Health care utilization data were obtained from medical charts. RESULTS: Statistical analyses supported the internal consistency and initial validity of LCI scores. Correlational results strongly point to the distinction made between illness-related and non-illness-related social difficulties and suggest that the LCI has some relation to existing measures (e.g., Child Behavior Checklist), while still providing a unique perspective on children's social functioning. Univariate and regression analyses revealed significant relations between LCI scores and health care utilization. CONCLUSIONS: These findings support the initial psychometric properties and clinical utility of the LCI scores. We discuss strengths and limitations of this study, as well as potential clinical applications for the LCI questionnaire.

Parental correlates of unintentional burn injuries in infancy and early childhood.

The main purpose of this paper is to review parental factors associated with unintentional burns in early childhood. The problem and characteristics of early childhood burns are discussed. Child injury prevention strategies and models are presented. Parental correlates of pediatric injuries in general and specific to burns are reviewed. In conclusion, the authors recommend greater examination of parental variables potentially amenable to treatment, such as psychological functioning, and improved methodology including the use of prospective analyses, multiple methods and informants, and comparison groups. These efforts should enable greater understanding of parental factors related and causal to early childhood burns and, in turn, guide prevention initiatives.