Henry T. Ireys

Framework for identifying children who have chronic conditions: The case for a new definition

Efforts to identify children with ongoing health conditions generally rely on lists of diagnoses. However, there has been a growing trend to use a noncategorical, or generic, approach in which such children are identified by the consequences of their condition. Recent legislation and the Supreme Court decision in Sullivan v Zebley adopt this broader concept and mandate that a noncategorical approach be used in determining eligibility for services and benefits. Traditional condition lists are less desirable because (1) every disorder to which children are subject cannot be included, (2) diagnoses may be applied inconsistently by clinicians and across settings, (3) condition labels alone do not convey the extent of morbidity for individuals, (4) there is a bias toward identifying only those children who have access to the medical care system, and (5) there is often a gap between emergence of symptoms or consequences and diagnosis. We developed a noncategorical framework for identifying children with ongoing health conditions that responds to the federal mandate and uses consequences of disorders, rather than diagnostic labels. It can be applied to meet the objectives of services, research, policy, reimbursement, or program eligibility; is consistent across diagnoses; is descriptive of the impact of morbidity; is adaptable to meet specific purposes; and can be modified by imposing different severity levels. Our screening tool will soon be available for practical use.

Psychological outcomes of a support intervention in mothers of children with ongoing health conditions: The parent-to-parent network

We compared depression, anxiety, anger, cognitive disturbance, and total scores on the Psychiatric Symptom Index (Ilfeld, 1976) for 365 mothers of 5-to-8 year-olds with diverse health conditions who were randomized either to an experimental (EG) or control (CG) group. EG mothers were offered a 12-month community-based support intervention; CG mothers received standard care. Posttest scores of EG and CG mothers did not differ significantly. Although intervention effects were not related to participation level or illness-related and sociodemographic factors, a significant interaction with stressful life events (SLE) was found. Among mothers reporting more than five SLE in the past year, posttest anxiety was lower in the EG than in the CG, but no difference was found between EG and CG mothers having less than five SLE. The intervention also acted as a moderator variable, with correlations of SLE and posttest depression, anxiety, and total symptoms significantly lower in the EG than CG. Possible explanations for these findings are discussed.

The Therapeutic Relationship in Child Therapy: Perspectives of Children and Mothers

Examined qualities of the therapeutic relationship as perceived by low-income children who were in treatment for serious emotional disorders and their mothers. Recent emphasis on engaging families in the treatment of their children highlights the importance of understanding processes that facilitate therapeutic partnerships. Therapeutic bonds (i.e., the closeness of the relationship to therapist) for both children and their mothers were assessed. One-hundred fifty-seven families participated. Cross-sectional analyses indicated that childrens perceptions of closeness with their therapists were associated with their perceptions of closeness with their mothers, their own age, and welfare status of the family. Maternal therapy bond scores were associated with mental health services efficacy and breadth of social support.

The Organization of Services for Chronically Ill Children and their Families

Despite a political climate that deters optimism for rapid growth in the field of maternal and child health, we believe that there are reasonable steps that can and ought to be taken in the years immediately ahead. These steps would lead to important and lasting changes in the delivery, organization, and financing of services to chronically ill children and their families. Furthermore, pediatricians can play important roles--as they have historically--in reshaping care for children with special needs. First, children with chronic illness and their families require a set of services substantially different from those required by the majority of the nations children. Just as there is no escaping the presence of a chronic illness for a child and family, the health care system cannot escape its responsibility to provide these services. This nation has been extraordinarily attentive to the medical services that these children need. Advances in the diagnostic and medical treatment procedures for many chronic illnesses have been remarkable, allowing many children to live far longer and in much better health than anyone would have expected two decades ago. This nation has not been so attentive to other services. A child with diabetes may have the finest medical care available in the region, yet her family lacks the money for gas to visit her in the hospital. The cystic fibrosis specialist may develop a comprehensive management strategy for his patient, but it fails to have full effect because the familys local pediatrician remains uninformed. These and many other examples convince us that the first step toward improving the organization of services for these children and their families must involve sustained national attention to their broad and special needs. Pediatricians are in an excellent position for this effort. Though most pediatricians will not have in their practice many children with the same chronic illness, they are likely to be the only medical practitioners who will get to know a broad spectrum of chronically ill children and their families. Because of this perspective they can be a truly informed and effective voice, articulating to their local communities the need for special services for this population of children. Second, services should be organized in such a way as to de-emphasize dependence on expensive tertiary care hospitals and instead to foster the delivery of care closer to the childs and familys own community.(ABSTRACT TRUNCATED AT 400 WORDS)

Young women with physical disabilities: risk factors for symptoms of eating disorders.

&NA; Women with disabilities are at risk for poor psychological adjustment and unhealthy weightcontrol practices. This study was conducted to determine the prevalence of symptoms of eating disorders in a clinic‐based sample of women who had two disabling conditions and to identify condition‐related risk factors that were linked to these symptoms. A cross‐sectional survey of 71 women (mean age = 23 yr) with spina bifida or rheumatologically related illnesses was conducted to assess the symptoms of eating disorders, condition‐related characteristics, and weight‐control practices. Symptoms of eating disorders were measured by the Eating Disorders Inventory (EDI). Eight percent of the respondents reported a sufficient number of symptoms of eating disorders to indicate a possible clinical disorder. More than 20% of the respondents scored at or above the clinical cut‐point on at least one of the eight EDI subscales. Selected conditionrelated characteristics (multiple conditions, condition‐affected driving, and uncertainty of illness course) were associated with EDI scores after adjusting for demographic variables, family factors, and weight‐control practices.

Variability among state Crippled Children's Service programs: pluralism thrives.

The authors review the history of the Crippled Childrens Service (CCS) program and report results of a survey of state CCS programs conducted in 1981. The results of the survey document extensive variability among state programs in respect to several indices, including numbers of children served, conditions covered, and services provided. With few exceptions, selected organizational, economic and demographic variables fail to correlate significantly with the variation of these indices. The strongest correlation, .40 (p less than .02) is between percentage of children served and program per capita expenditures, suggesting that relatively wealthier programs tend to serve more children. Furthermore, analyses of the survey results show that mean coverage by CCS programs of surgical disorders is significantly greater than mean coverage of medical disorders or behavioral disorders (p less than .001). The findings of this study underscore the considerable influence of historical and leadership variables on the functioning of state CCS programs.

Children and Schools: The Special Issues of Chronically Ill Children.

Children who suffer from severe, chronic illnesses are a neglected group in our society. Their suffering, the heavy burdens they and their families bear, the human resources lost to us all are matters largely unknown to the general public. Chronically ill children live out their lives in a twilight zone of public understanding. As a consequence, our nation, ordinarily attentive to problems of children and families, has lagged in its response to the urgent needs of children with chronic illnesses. A systematic review of the needs of children with severe chronic illnesses is