Inadequacy of health care for the nation's chronically ill children

There are approximately 750,000 children in the United States with a severe chronic illness. The organization of health services for these children is characterized by diversity, fragmentation, and high expense. Moreover, the sources of financial support for this care typically leave many gaps in coverage. The families of these children face many years of mounting medical bills with little help in sight. A need exists for the establishment of a national policy that will provide an organized system of health care for the nation's chronically ill children. This policy must address current inadequacies and provide comprehensive ongoing care for these children and their families.     

Neglect of chronically ill children

Child neglect is the most prevalent form of maltreatment; more children die of neglect than of abuse. Neglect has been found to be more prevalent than physical abuse among the population of children with chronic illnesses. Data from a retrospective chart review illustrate the ways in which neglect affected 61 children with chronic illnesses. Types of neglect include medical care neglect, educational neglect, abandonment, emotional neglect, and physical neglect. The state Child Protection Agency was notified of neglect in 67 instances. Two children died subsequent to neglect. Sixteen children were abandoned; 12 of these children were abandoned in the hospital. More than half (37) of the reports resulted in change of custody for these children. All of these children suffered from short-term morbidity and some from long-term morbidity due to neglect. Neglect can be a serious and consequential problem for children with chronic illness.     

Evaluation of the delayed skin reaction in chronically ill children

The evaluation of delayed cutaneous hypersensitivity by using a standardized test system offers an assessment of cell-mediated immunity. The number and diameter of positive responses induced by seven antigens result in a score. The study included 21 healthy children, 20 children with bacterial infections as well as 20 patients with chronic renal insufficiency. In addition, 16 children with cystic fibrosis were also studied. No differences in the skin reactions was found in children with bacterial infections, showing a score of 13 +/- 6 mm. But children with cystic fibrosis or with renal insufficiency exhibited a severe impaired cell-mediated immunity. To what extent the alteration of cell-mediated immunity affects the course of the various diseases, has to be investigated by further prospective studies.     

Increased prevalence of burnout symptoms in parents of chronically ill children

Aim: To examine the prevalence of burnout symptoms in the context of parenting a chronically ill child. Methods: A total of 252 parents of children with Type 1 Diabetes Mellitus and 38 parents of children with Inflammatory Bowel Diseases participated in a population‐based study. A control group consisted of 124 randomly selected parents of healthy children. We used self‐report questionnaires to assess symptoms of burnout. Results: The main finding was that significantly more parents of children with chronic diseases (36%) scored for clinical burnout, compared with parents of healthy children (20%). Burnout symptoms were most prominent among mothers of children with diabetes, although fathers of children with diabetes and mothers and fathers of children with inflammatory bowel diseases also reported higher levels of various burnout symptoms. Conclusion: Burnout may be a useful model for understanding long‐term parental responses and should be acknowledged among the different types of psychological consequences of the multi‐faceted experience of parenting a child with chronic illness. Gender seems to influence the risk of burnout symptoms. Continued research about other background factors, and how the parents’ situation changes over time are warranted. In the clinic, we need to draw attention to the group of parents who may suffer from burnout.     

Vitamin D status of chronically ill or disabled children in Victoria

OBJECTIVE: To establish the percentage prevalence of hypovitaminosis D in chronically ill or disabled children in Melbourne, Australia. METHODOLOGY: A group of inpatients at the Royal Children's Hospital, Melbourne, Victoria, as identified by the primary unit, were sampled to measure serum vitamin D and parameters of bone turnover. A second group of disabled children (outpatients) were also measured to establish vitamin D status. RESULTS: Of the total population, 54.9% were found to have low serum 25 hydroxy (25OH) vitamin D levels. Of the inpatient group, 25.4% were vitamin D deficient (<30 nM/L), and 27.1% were vitamin D insufficient (30-50 nM/L). The mean 25OH vitamin D was 52.1 nM/L. Of the outpatient group, 15.4% were vitamin D deficient, whilst 42.3% were found to be insufficient. The mean vitamin D level was 41.2 nM/L. No difference attributable to intellectual versus physical disability was found. Anticonvulsant use and ambulatory status was not predictive of vitamin D status in the children examined. Of the total population, 0.05% were found to have secondary hyperparathyroidism. The mean 25OH vitamin D level of this subgroup was 30.6 nM/L. Dark skin tone was found to be significantly associated with hypovitaminosis D (P = 0.001), where all five children with dark skin tone were found to have serum 25OH vitamin D levels <50 nM/L. Of the seven disabled children (outpatients) found to be iron deficient, four had coexistent hypovitaminosis D. CONCLUSION: The percentage prevalence of hypovitaminosis D is high in both chronically ill, and physically/intellectually disabled children in Melbourne, Australia. Increased vigilance and recognition of this deficiency state is needed as an important health prevention strategy.     

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 nation's 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 family's 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 child's and family's own community.(ABSTRACT TRUNCATED AT 400 WORDS)     

Factors associated with recurrent hospitalization in chronically ill children and adolescents

OBJECTIVES: To determine factors associated with recurrent hospitalization in children with chronic illnesses in the Barwon Region. METHODOLOGY: Patients with four or more admissions to the Geelong Hospital children's ward over a 12-month period were identified. Their records were reviewed and the opinions of involved staff (medical, nursing, psychiatry, psychology, and social work) were sought. Multidisciplinary discussions were held to identify factors precipitating or maintaining the need for hospitalization. The numbers, illnesses and profiles of those admitted recurrently were compared with the data from the Barwon Paediatric Consultation Profile from the same period, and with those patients seen by the local counselling service for young people with chronic illnesses. RESULTS: Twenty-seven children had four or more admissions over the 12 months; these represent 0.05% of the child population regionally, or 2% of those with chronic illness. They account for 8.7% of hospital admissions and 16% of inpatient days. Two-thirds (18/27) had major psychosocial issues largely responsible for their admissions. A checklist was formulated of important medical, family, social, psychological, developmental, and institutional considerations. The most frequently identified psychosocial issues were medical dependency, psychological or medical problems affecting other family members, family and medical disparity regarding the treatment agenda, the lack of more intensive community supports, and medical controversy regarding best management. CONCLUSIONS: Ongoing medicalization and medical dependency, driven both by staff and families, can perpetuate recurrent hospitalization. Further awareness and training in these issues and development of community resources will be necessary if this process is to be changed.     

Siblings of chronically ill children: a question of vulnerability versus resilience

The study of siblings of chronically ill brothers or sisters would benefit from a change in perspective. Research in the last decade still framed studies from the perspective of vulnerability rather than resilience. Having benefited from these studies, the study questions need to be reframed. Because childhood chronicity is a given, identifying risk factors for both able-bodied brothers and sisters as well as disabled children can reduce negative outcomes for these children and their parents. Many children are living successfully with disabled siblings, and their success should be the focus of current research so that appropriate interventions can be initiated.     

Parent salvage and parent sabotage in the care of chronically ill children

Adaptive parental behaviors produced from dealing with prolonged illness may sabotage medical care of the chronically ill pediatric patient. Such parental behaviors may be the result of unsuccessful intrapsychic or interpersonal salvage operations in the response to the strains resulting from illness in their child. They may resemble psychopathology, but actually can be reversible. Five cases are presented to illustrate differential diagnosis of parent difficulties ranging from adaptive strain in normal parents to Munchausen's syndrome by proxy in parents of children with chronic illness. A typology of parent-child pathology in health and chronic illness is presented. The literature is reviewed, diagnostic features are elaborated, and management strategies are suggested.     

Psychological adaptation of siblings of chronically ill children: research and practice implications

Studies of the psychological adjustment of physically healthy siblings to their sibling's chronic illness indicate that there is no one-to-one correspondence between the presence of a chronic illness and risk for psychological disturbance in nonafflicted children. Although the presence of a chronic illness may increase siblings' subjective distress, effects of a chronic illness on the psychological adjustment of siblings are selective and vary with age, sex, and type of illness. Chronic illness is a stressor which, in interaction with other variables, may contribute to increased risk of psychological disturbance for some siblings. Although the variables which mediate the effects of a chronic illness on siblings are as yet poorly understood, the quality of family functioning and relationships has both direct and indirect effects on siblings and deserves primary consideration in the comprehensive care of chronically ill children. Future research might profitably focus on individual differences in sibling adaptation, especially on factors which contribute to positive adjustment, the role of the family context as a mediating influence, and evaluation of preventive interventions designed to enhance sibling adaptation.     

The burden of oral ill health for children

This paper aims to draw attention to the common oral and dental diseases and conditions in childhood in the context of aetiological factors and to highlight how many of the risk factors for oral and dental ill health are common to other areas of chronic diseases among this age group: diet, hygiene, trauma, stress, and in older children and adolescents, smoking, alcohol use, and use of illegal substances. Suggestions as to how to address these common risk factors are proposed.     

Mental disorders in chronically ill children: parent-child discrepancy and physician identification.

Mental disorders affect 18% to 20% of children and adolescents. The rate in children with chronic illness is probably higher. This study of chronically ill children addresses the discrepancy between parent and child reports of child psychiatric disorders and the extent to which pediatricians agree with reports by children and parents regarding such problems. Eighty-three subjects, aged 9 to 18 (mean = 12.6), were recruited; they had the following diagnoses: cystic fibrosis, diabetes, inflammatory bowel disease, and cancer. Subjects and one parent were interviewed separately, using the Diagnostic Interview Schedule for Children (DISC-2.1). The subject's physician completed a questionnaire asking about the presence of a range of mental disorders. Forty-one (49%) subjects reached threshold criteria for a psychiatric diagnosis, using both parent and child as informants. Psychiatric disorders were identified in only 22 subjects (54%) by the child and in 28 (68%) by parent alone. Thus, reliance on one informant resulted in failure to identify one third to one half of psychiatric disorders. Physicians' ratings agreed significantly with children's reports but not with parental reports, suggesting that physicians are sensitive to children's concerns but may underestimate the value and importance of parents' reports. Clinical and research evaluations of chronically ill children, as well as clinician identification of mental health problems, will be influenced by the choice of informant.