Mental health in adolescents with chronic physical illness versus controls in Northern Russia

AIM: To study the behaviour/emotional problems and depression in adolescents with and without physical illnesses; to compare the same psychological parameters in adolescents with different disorders. METHODS: The sample consisted of 148 adolescents aged 13-16 years with one of the following physical chronic conditions: diabetes (n = 55), asthma (n = 59), or epilepsy (n = 59). Comparative data were obtained from a group of 301 schoolchildren. Test batteries (Child Behaviour Check-List, Youth Self Report, Beck Depression Inventory, socio-economic status questions) were individually completed by adolescents and their mothers. RESULTS: Overall adolescents with physical illness had more behaviour/emotional problems and were more depressed compared to controls although results varied according to the informants and the disease severity. Two risk groups were revealed: girls with asthma and boys with epilepsy. CONCLUSION: Our results suggest that mental health in adolescents with chronic physical illnesses is poorer than in controls and their mental health state is very much associated with the disease severity. The findings of the study can help to develop disease targeted and comprehensive interventions in outpatient clinics of Northern Russia in order to reduce behaviour and mood disorders in adolescents with chronic physical illnesses and therefore to smooth the transition through their teenage years.     

Psychological consequences of chronic physical illnesses in children and adolescents

Chronic illnesses in children and adolescents have devastating influence on them and their families. The patients have to cope up with illness, medication and it’s influence on their development. Consequently a large number of them have emotional disorders which influence the course and outcome of physical disorder. In recent few years, research has shifted its focus from merely figuring out the prevalence of the emotional disorders to understanding the adjustment to chronic illness under defined theoretical constructs. Apart from temperamental variation, family burden and functioning have been identified as factors operating in determining adjustment. Distress experienced by the family and disturbed family functioning directly influences the emotional outcome in physically disordered children. Comprehensive coordinated care services are required for integration of these patients into the community.     

Mental health and psychosocial functioning in adolescents with congenital heart disease. A comparison between adolescents born with severe heart defect and atrial septal defect

Twenty-six adolescents, aged 13–18 years, with severe congenital heart disease were matched for sex, age and living area with 26 adolescents with repaired atrial septal defect and regarded as physically fit. These two groups were compared according to somatic condition, psychopathology, psychosocial functioning and chronic family difficulties. A higher rate of psychiatric problems in the complex group, an association between psychosocial functioning and physical capacity, as well as an association between psychosocial functioning and chronic family difficulties were observed. These findings suggest that physical capacity is of crucial importance for mental health and functioning of adolescents with congenital heart disease. The association with chronic family difficulties also suggests that a comprehensive biopsychosocial approach is necessary in the treatment and rehabilitation of these patients.     

A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease

Risk-and-resistance models identify factors that predict psychosocial adjustment to pediatric chronic illness, including sickle cell disease (SCD), but have not been applied to understand health outcomes. The study objectives were to examine prospectively the relationship of coping and family functioning with health outcomes for adolescents with SCD, accounting for sociodemographic and psychosocial risk. Forty-one adolescents and their families (41 primary caregivers, 9 second caregivers, and 15 healthy siblings) completed paper-and-pencil measures of coping and family functioning at a baseline assessment (time 1). At both time 1 and time 2 (1 y later), disease severity, SCD complications, healthcare utilization, and average hemoglobin level were derived from medical file reviews. Time 1 disease-related parenting stress predicted time 2 health outcomes; however, there were no significant associations for coping. Families concordant in reporting lower family functioning had teens with increased disease severity and greater healthcare utilization. Examination of moderation of disease-related parenting stress by a risk index showed main effects for risk and for disease-related parenting stress for time 2 disease severity and time 2 healthcare utilization. Interaction effects were not significant. Efforts to explore specific mechanisms by which adaptive family functioning contributes to health outcomes for adolescents with SCD should continue, with particular attention to addressing the potential role of multiple sociodemographic and psychosocial risk variables.     

Psychological factors affecting pediatric inflammatory bowel disease

PURPOSE OF REVIEW: Psychological factors affecting pediatric inflammatory bowel disease, intervention and other therapeutic resources are reviewed. RECENT FINDINGS: Children with inflammatory bowel disease are at risk for more difficulties in psychosocial functioning than healthy children, particularly depression, anxiety and social difficulties. Psychosocial difficulties are generally similar to those found in other pediatric chronic illnesses and are clinically significant in only a subset of those with inflammatory bowel disease. Conflicting results have been reported for the areas of family dysfunction and body image, and few studies have been published in the areas of stress/coping and eating disorders. One pilot study suggests psychotherapy is effective for depressed adolescents with inflammatory bowel disease. SUMMARY: The scant existing research limits conclusions about which children are most at risk for experiencing problems. Future research should investigate a range of psychosocial outcomes and risk factors for developing problems. Prevention and intervention strategies aimed at improving psychosocial functioning in children with inflammatory bowel disease should be developed and evaluated.     

Children with chronic illness. The prevention of dysfunction

Children with long-term illnesses are at risk of developing problems in psychological adjustment and in functioning in activities of daily life. Their families face increased risks of marital and economic dysfunction, and siblings too face special tasks living with a chronically ill child. A variety of interventions can help children and families to cope effectively with the tasks of chronic illness. Pediatricians should be alert to effects on the family. Children respond to family stress in very predictable ways. Inasmuch as the stress of chronic illness may affect the marital relationship, there is a likelihood of concurrent behavioral and school problems. Relatively sudden changes in behavior may signal family issues that require professional attention. Drotar et al. maintain that professionals should serve as guides or advocates for children with chronic illness and their families. The relationship that develops between families and professionals is based on trust. They believe that "trust appears to evolve from the following principles: (1) continuity of relationship, (2) active participation by professional caregivers, (3) mutual participation of child and family, (4) advocacy, (5) a focus on coping and competence, (6) a developmental perspective, and (7) a family-centered focus." Cadman et al. identified a similar set of elements that characterizes an efficacious preventive intervention approach. In addition, they propose specific programmatic efforts that are associated with less morbidity. These include ongoing education and counseling for the child, family, and community regarding chronic illness and its management, use of stress management techniques to promote mastery and reduce the impact of stressful life events, and facilitation of social support mechanisms for families with chronically ill children. We have added consideration of the child's performance in school.     

Understanding the pathway between the transplant experience and health-related quality of life outcomes in adolescents

Abstract:  Developments in solid organ transplantation have resulted in improved survival for children with advanced kidney, liver, and heart disease; however, concerns have been raised regarding the quality of life of survivors. This study examined HRQOL in adolescent transplant recipients. We examined the influence of demographic, treatment regimen, and family factors on physical and mental health domains of HRQOL. The current single-center investigation involved 68 solid organ transplant recipients and their parents. All families participated in a structured interview to collect information on demographics, characteristics of the adolescents' disease and treatment regimen, family functioning, and HRQOL for parents and adolescents. Using hierarchical regression analyses, predictive models of physical functioning and mental health outcomes for adolescent transplant recipients were developed for parent-proxy and adolescent self-report. Perceived frequency of medication side-effects and family conflict significantly contributed to adolescent physical functioning and mental health outcomes. Taken together, transplant consequences and family environment significantly impact physical and mental health outcomes in adolescent transplant recipients. Our findings demonstrate the need for pharmacological considerations and psychological interventions to address these areas.     

Family functioning and coping styles in families of children with cancer and HIV disease

Disease-specific characteristics of pediatric illnesses may influence the functioning of families and the coping responses they enact. This study compared family functioning and coping styles within and between 2 different medical groups: families of children with cancer (n = 44) and HIV disease (n = 65). Most caregivers reported healthy family functioning, and no between-group differences in functioning emerged. However, with regard to coping, more reliance on social support was indicated among the cancer group. Also, the HIV group largely sought support from family, whereas both family and nonfamily support were sought among the cancer group. Better functioning was related to reframing, an active coping style, within the cancer group and passive coping within the HIV group. Thus, coping strategies and their implications for family functioning vary by condition. Researchers should avoid combining various illness groups indiscriminately. Likewise, clinicians should be sensitive to disease-specific factors when helping families learn to cope with illness-related stressors.     

Behavioral aspects of chronic illness in children and adolescents

Despite the detail that is provided on the potential negative outcomes of children and families who have chronic illnesses, most of these families show admirable resilience. Most children adjust to their illnesses within 1 year and most families achieve healthy stable functioning with accommodations for the illness. The challenge of adjusting to a chronic illness can provide an excellent opportunity for a child or adolescent to master crucial skills, such as emotion regulation and problem-solving. Mastery of these skills can engender strong self-esteem and confidence. As our knowledge about the predictive factors for positive behavioral outcomes increases, the pediatrician can be in the position to minimize the negative behavioral aspects of chronic illness and facilitate adjustment. Attention to the behavioral aspects of chronic illness in the three critical areas of psychosocial adjustment of the patient, adjustment of the family, and adherence to regimens, allows pediatricians to play a crucial role in prevention, early identification, and early interventions. We hope that the material that is included in this review provides a starting point for clinicians to understand and to begin to assess these critical factors in chronic illness in children and adolescents.     

Self-concept, attitude toward illness and family functioning in adolescents with type 1 diabetes

OBJECTIVES:

The primary objective of the present study was to assess self-concept in adolescents with type 1 diabetes, and to determine whether this is associated with attitudes toward having chronic disease, family functioning or severity of diabetes. The secondary objective was to assess the impact of family income, sex, age and age at diagnosis on adolescent self-concept.

METHODS:

A cross-sectional, self-report survey of 48 adolescents with type 1 diabetes (22 boys and 26 girls; mean ± SD age at time of study 15.2±1.7 years [range 12.2 to 18.0 years]; mean age at diagnosis 9.2±3.3 years [range 1.3 to 14.9 years]) was performed using the Piers-Harris Children’s Self-Concept (PHCSC) scale, second edition; the Child Attitude Toward Illness Scale; and the Family Assessment Measure scale, version III. Demographic information including net family income and a symptom inventory form to assess disease severity was collected.

RESULTS:

Adolescents’ self-concept measured by the PHCSC scale was significantly positively correlated with a more positive attitude toward chronic illness as measured by the Child Attitude Toward Illness Scale. The PHCSC scale was found to have a significant negative correlation with the Family Assessment Measure scale score, indicating that a better self-concept was correlated with enhanced family functioning. Self-concept was not significantly correlated with disease severity, income of family, sex, age at diagnosis, age at time of study, episodes of diabetic ketoacidosis or episodes of hypoglycemia.

CONCLUSIONS:

Adolescents with better self-concept had more positive attitudes toward their chronic illness and enhanced family functioning. Although no correlation with diabetes disease severity was seen in the study population, interventions aimed at improving adolescent self-concept may have a positive impact on diabetes treatment by improving attitude toward living with type 1 diabetes.     

Physical functioning in female caregivers of children with physical disabilities compared with female caregivers of children with a chronic medical condition

OBJECTIVES: To evaluate if physical functioning is different in female caregivers of children with physical disabilities compared with female caregivers of children with nondisabling medical illnesses, and to investigate the factors associated with functioning level. DESIGN: Cross-sectional survey. SETTING: University-based clinics. PATIENTS: Ninety consecutive female caregivers of children presenting to a pediatric physical medicine and rehabilitation (PM&R) clinic, and 23 presenting to a pediatric endocrine clinic. INTERVENTION: Fifteen-minute self-administered survey. MAIN OUTCOME MEASURES: The dependent variable measured was physical functioning (physical functioning subscale of the Short Form-36). Independent variables measured were the average back pain severity over the last week (100-mm visual analog scale), mood (using the Center for Epidemiologic Studies-Depression Scale), work status, amount of lifting at work, caregiver demographics, child demographics, and the physical functioning ability of the child (measured using the WeeFIM scale). RESULTS: The mean (SD) physical functioning score of caregivers of children in the pediatric PM&R clinic was 80.6 (21.9), which was less than the score of 90.2 (17.6) for caregivers in the pediatric endocrine clinic (mean difference, 9.6; 95% confidence interval, -0.9 to -18.4). The physical functioning score of 77.7 (22.9) in caregivers of PM&R clinic children with a WeeFIM scale score of 1 to 4 was significantly worse than the 90.5 (14.8) in female caregivers of children with a WeeFIM score of 5 to 7 (mean difference, 12.8; 95% confidence interval, -2.0 to -23.6). This decrease is associated with the average pain severity, mood, and total length of time of back pain in the previous 12 months. Regression analysis shows that pain severity and caregiver mood are significantly related to the physical functioning status of the caregiver. CONCLUSIONS: Physical functioning is decreased in female caregivers of children with a physical disability. This decrease is associated with caregiver pain severity and mood.     

Psychosocial consequences of head injury in children and adolescents: implications for rehabilitation

Studies measuring psychosocial outcome in children and adolescents have shown that head injury leads to cognitive impairment which is directly related to the severity of injury in those with very severe head injury. Psychiatric disorders are also related to the severity of injury but here the relationship suggests that mediating factors are involved. No specific pattern of post-traumatic psychological/psychiatric dysfunction emerges from the studies, but it is clear that, as with adults, psychosocial recovery lags behind physical. Head injury affects the functioning of the young person in the family, at school, and within the wider community, often resulting in a secondary handicap of low self-esteem. The multitude of deficits which are a consequence of severe head injury present a challenge for rehabilitation specialists. A multi-disciplinary, multi-specialist, and multi-agency response is required. As a result, families are often presented with a bewildering array of treatments and programmes at different agencies. A case manager can be helpful in ensuring the appropriate use of available resources and can be the one professional in charge of a coordinating case record.     

Psychological adjustment of physically sick children: relationship with temperament

The contribution of temperament and duration of illness in the variability in the psychological adjustment of children with chronic physical illness was studied. The temperament and psychological adjustment of a group of 50 children with chronic physical illnesses not involving the brain and a matched control group of 50 physically healthy children were assessed through Temperament Schedule and Childhood Psychopathology Measurement Schedule developed and standardized by the first author. Results indicated that sick children were less psychologically adjusted than the healthy controls and more adjusted than children referred for psychiatric concerns. Twice as many physically sick children (32%) showed maladjustment than did healthy children (16%). Temperament, particularly low distractibility, made a significant contribution to predicted variance (23%) in maladjustment whereas duration of illness did not.     

Predictors of acute child and family outcome following traumatic brain injury in children

OBJECTIVE: To examine the relative contributions of injury severity, level of physical and cognitive disability, child behavior and family function to short-term outcome 6 months following traumatic brain injury (TBI) in children. DESIGN: Prospective, longitudinal, between-group design, comparing preinjury and postinjury measures of functional outcome across three levels of injury severity. SUBJECTS: One hundred and twelve children, aged 2-12 years admitted to the Royal Children's Hospital, Melbourne, with a diagnosis of TBI. The sample was divided into three groups, according to injury severity: mild TBI (n = 31), moderate TBI (n = 52) and severe TBI (n = 29). Children with a history of neurologic, developmental and psychiatric disorder were excluded from participation. MAIN OUTCOME MEASURES: Levels of postinjury functioning in the following domains: physical function, cognitive ability (incorporating intellect, memory and attention), behavioral and family functioning, and level of family burden. RESULTS: A clear dose-response relationship for physical and cognitive outcomes was found, with severe TBI associated with greater impairment of physical, intellectual, memory and attentional function. For psychosocial outcome, results were less clearly linked to injury severity. Preinjury behavioral and family functioning were closely related to postinjury function in these domains, with an interaction identified between family function and child behavior at 6 months postinjury. Family functioning remained unchanged postinjury, although level of burden was high, and predicted by injury severity, functional impairment and postinjury behavioral disturbance. CONCLUSIONS: These results suggest ongoing functional problems for the child and significant family burden 6 months following TBI. The nature and severity of physical and cognitive problems are most closely related to injury severity, with family functioning and child behavior better predicted by psychosocial and premorbid factors.     

Psychosocial functioning of siblings of children with rheumatic disease

The potential impact of an ill child on other siblings in the family was examined by comparing 72 siblings of children with rheumatic disease with 60 siblings of healthy children from demographically matched families. Psychosomatic, behavioral, emotional, and social problems, as reported by both the parents and the siblings, were investigated. Although siblings of patients with rheumatic disease generally were functioning as well as siblings of healthy children, they reported having more allergies and asthma. A set of vulnerability and protective factors was tested as predictors of sibling functioning. Cohesive and expressive family environments in which mothers and patients with rheumatic disease were functioning adequately promoted better adaptation among the siblings.     

Special considerations for the health care of adolescents with chronic illnesses

While issues of independence, sexuality, and identity are important for all adolescents, they become of particular concern for chronically ill teenagers because of the interaction of rapid developmental change in these areas with the stresses of chronic illness. Unlike adults with chronic diseases who often need to be rehabilitated so that they can function independently again and resume their sexual lives, adolescents need to be habilitated; they have no prior experience to draw on. Chronically ill children can be sheltered and protected from many stresses by their families, but as they move into the adolescent years, they must be allowed to gradually take over responsibility for their actions. This takes practice, and some mistakes are inevitable. In addition, teenagers with chronic illnesses deserve assistance to help them maximize their strengths and develop a positive self-identity. Health professionals have a significant role to play in encouraging independence, preventing adverse consequences of sexual behavior, and enhancing the self-image of their chronically ill adolescent patients.     

Bowel function,mental health,and psychosocial function in adolescents with Hirschsprung's disease

Accepted 2 September 1996
Congenital intestinal malformations are uncommon and may pose lasting somatic difficulties. Patients with anorectal anomalies have a high frequency of persistent faecal dysfunction and psychosocial problems. This study examined whether adolescents with Hirschsprung''s disease have more psychosocial problems than their healthy peers. Nineteen adolescents (mean age 15.7 years) with Hirschsprung''s disease were assessed for bowel function, anorectal physiology, mental health, and psychosocial functioning by physical examinations, semistructured interview, and standardised questionnaires. The adolescents were compared with controls. The parents of 13 adolescents with Hirschsprung''s disease were interviewed and completed questionnaires. Thirty two per cent of the adolescents with Hirschsprung''s disease had significant impairment of continence, but no more psychopathology (16%) nor psychosocial dysfunction as a group than their healthy peers. Faecal incontinence was associated with poorer psychosocial functioning and parental criticism. The fact that a significant number of patients with Hirschsprung''s disease have incontinence into adulthood indicates the need for parental counselling, encouraging realistic expectations about continence.

     

Risk factors for attempted suicide during adolescence

It is unknown whether adolescents can provide the information necessary to identify their risk for attempted suicide. The present study was designed to determine whether data collected directly from adolescents can be used to develop a simple model for differentiating suicidal from nonsuicidal adolescents. Patients aged 13 to 19 years hospitalized for medical complications of serious suicide attempts (n = 56) or for acute illnesses unrelated to injuries or ingestions (n = 248) completed self-administered questionnaires pertaining to psychosocial function, recent stress, alcohol and drug use, and health care use. Compared with ill adolescents, suicidal adolescents had poorer mental health, impulse control, family relationships, and school performance; higher 3-month stress scores and alcohol-use scores; and more use of 7 of 12 drugs (P less than .05). Compared with ill adolescents, suicidal adolescents were more likely to report previous suicide attempts (39% vs 10%, P less than .001) and previous mental health care (27% vs 8%, P less than .001) but were less likely to identify a primary care site (61% vs 87%, P less than .001). In a logistic regression model based on previous suicide attempts, previous mental health care, poor school performance, marijuana use, and dependence on the emergency room for primary care, 84% of the suicidal and 55% of the ill adolescents were correctly identified. If validated prospectively, these five self-administered questions may constitute a helpful screen for the rapid identification of suicidal adolescents.     

Family dynamics and chronic illness: children with diabetes in the context of their families

The present study is based on the assumption of an interaction between family functioning and chronic illness. Using a systemic approach, the intra-familial situation of families with a diabetes-affected child is examined. 44 families were evaluated using a family diagnostic instrument ("Familienb?gen") and compared with 31 control families with a healthy child. Furthermore, the study looked at the influence of the level of family functioning on glycemic control, as measured by HbA1c values, and vice versa. Families with a child affected by diabetes showed significantly more dysfunctional domains and higher discrepancies of the ratings in the family diagnostic instrument (p < 0.05). Unexpectedly, no significant interaction between family functioning and glycemic control was found. Poor glycemic control therefore did not have any negative effects on the family dynamics, in fact, the opposite was often the case. Also, the relationship between siblings was judged more positively when one of the siblings was chronically ill (p < 0.05). The results show that despite the fact that diabetes in children may lead to an increase in impairment of intra-familial dynamics, it may, at the same time, offer opportunities for an improvement of family relationships. However, if physiological parameters deteriorate in the child (poor glycemic control), family problems seem to become less important. Success in the treatment of diabetes patients should therefore not only be measured by the quality of glycemic control, but also by considering psychological factors and aspects of family dynamics.     

Loving your child to death: Considerations of the care of chronically ill children and euthanasia in Emil Sher��s Mourning Dove

How do parents cope when their child is ill or dying, and when he or she is experiencing constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that they wish their child to be dead? The purpose of the present paper is to explore these questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. Mourning Dove, a play written by Canadian playwright Emil Sher, was inspired by the case of Saskatchewan wheat farmer Robert Latimer who killed his 12-year-old daughter, Tracy, who suffered with cerebral palsy and had begun to experience tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effect the child’s illness has on the family. The reading and examination of nonmedical literature, such as Mourning Dove, serves as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families.