Siblings of children with a chronic illness: a meta-analysis

OBJECTIVE: To review the literature pertaining to the siblings of children with a chronic illness. METHODS: Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. RESULTS: We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. CONCLUSIONS: More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.     

The Role of Maternal Psychological Adjustment in the Measurement of Children's Functional Status

Studied the ways that mothers interpret illness behavior intheir children to assess whether maternal psychological adjustmentpredicts maternal perceptions of children's behavioral limitationsand attribution of these behaviors to chronic illness. Functionalstatus ratings and attributions to illness by 365 mothers of5-to 8-year-old children with chronic illnesses were associatedwith children's overall adjustment but not with mothers' ownpsychological distress. Illness attributions also were relatedto the child's medical visits and hospitalizations. Thus, mother'sillness attributions are related to her perceptions of the child'shealth and more general behavioral adjustment, but not to herown mental health. Results support the validity of the FS II(R)as a measure of functioning related to children's health statusthat is not influenced by maternal psychological adjustment.     

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.     

Who joins a preventive intervention? How risk status predicts enrollment

The objective of this study was to identify social, psychological, and health‐related variables that predict mothers' refusals to join a prevention program for families of children with chronic illnesses. A two‐step recruitment process was used with 193 families of children with chronic illnesses. First, families were recruited for a longitudinal research survey. Then, mothers were given the opportunity to randomly receive one of two programs. Mothers who refused the opportunity to participate in either program continued in the research project. Data were collected through structured interviews at baseline and 12 months later. Compared to mothers who agreed to participate in one of the programs, those who refused reported more confidence, more support, and less depression and higher functional status and better adjustment in their child. Mothers who agree to participate in a longitudinal research effort but refuse to participate in an intervention program are likely to be functioning well, and may perceive no need for a program designed to prevent mental health problems. © 2001 John Wiley & Sons, Inc.     

Maternal Child-Rearing Behavior in Three Groups: Cystic Fibrosis, Insulin-Dependent Diabetes Mellitus, and Healthy Children

Compared child-rearing behaviors among mothers of children (ages4–14) with cystic fibrosis (CF) (N = 26), insulin-dependentdiabetes mellitus (IDDM) (N = 26), and mothers of physicallyhealthy children (N = 26), on six domains, including involvement,limit setting, responsiveness, reasoning and guidance, freeexpression, and intimacy using the Iowa Parent Behavior Inventory.Maternal Reports of their child-rearing behavior were comparableacross the three groups with one exception: Mothers of childrenwith chronic illnesses (CF and IDDM) were significantly lesslikely to set limits than mothers of healthy children. The presentfindings are consistent with those of other studies that haveidentified few differences in child-rearing practices betweenmothers of children with chronic illnesses and mothers of healthychildren. Future research should identify situation-specificparenting tasks unique to childhood chronic illness.     

Psychological needs and HIV/AIDS

Mental Health problems are associated with life-threatening illnesses generally and Acquired Immune Deficiency Syndrome (AIDS) specifically. This report describes the range and extent of psychological problems and therapeutic input for all patients (n = 258) referred to an HIV clinical psychology service over a one-year period at a teaching hospital in the area of highest HIV prevalence in the UK. The majority (79%) were HIV positive; of these 92% were gay males, 6.5% heterosexual women and 1.5% heterosexual men. The age range was 15 to 72 years. Referrals were received for patients at all stages of HIV disease and for partners and relatives who were HIV negative but affected by HIV infection in another. The highest rate of referral was for HIV positive patients who were asymptomatic and the greatest intensity of need was for those with AIDS. Suicide (ideation or behaviour) was an issue in referral for 43 patients. Assessment revealed the major problems to include anxiety (48%), relationship problems (31.7%), depression (26.5%), adjustment to HIV status (16.9%), bereavement (12%), employment (11%), sexual issues (10%), isolation and suicide (9% each). Psychological therapy for the majority took the form of short-term or crisis intervention. Group intervention did not substitute for individual therapy. The needs of patients were examined. They ranged from general interventions addressing adjustment to infection with HIV or an AIDS diagnosis, to specific input for issues such as sexual difficulties or coping with physical illness and bereavement. The data are discussed in terms of the growing demand for psychological services.     

Correcting physical activity energy expenditure for body size in children

Being able to compare the energy cost of physical activity across and between populations is important. However, energy expenditure is related to body size, so it is necessary to appropriately adjust for differences in body size when comparisons are made. This study examined the relationship between the daily energy cost of activity and body weight in 47 children aged 6–10 years. Log–log regression showed weight^1.0 to be an inappropriate adjustment for activity energy expenditure in children, with a more valid adjustment being weight^0.3. Clearly, both weight dependent and non-weight dependent activities are part of everyday living in children. This balance influences how energy expenditure is correctly adjusted for body size. Investigators interpreting data of energy expenditure in children from children of different body sizes need to take this into consideration.     

Psychiatric adjustment in chronic fatigue syndrome of childhood and in juvenile idiopathic arthritis

BACKGROUND: High rates of psychopathology and of personality problems have been reported in children and adolescents with chronic fatigue syndrome (CFS). It is not clear whether this is consequent on the experience of chronic physical ill health. We compare psychiatric adjustment in children with CFS and in children suffering from another chronic physical disorder (juvenile idiopathic arthritis or JIA). METHOD: Our sample consisted of 28 children with CFS and 30 with JIA attending tertiary paediatric centres (age range, 11 to 18 years, mean 15, S.D. 2.3). In order to assess psychiatric status and functioning, we used the K-SADS psychiatric interviews, CGAS and Harter Self-Esteem Questionnaire with child subjects; behavioural questionnaires (CBCL) and child personality assessment interviews (PAS) with parent informants. RESULTS: Psychiatric disorders in the year prior to interview had been present significantly more commonly in the CFS group (72% v. 34% in JIA) and were more impairing to them (CGAS scores of 45 v. 77). Most common diagnoses in both groups were depressive and anxiety disorders. Personality problems were also significantly more frequent in CFS subjects (48% disorder and 26% difficulty v. 11% and 11% in JIA). There were few differences between the two groups in self-esteem. CONCLUSIONS: Psychopathology and personality problems are common in children and adolescents with severe forms of CFS and cannot be explained strictly through the experience of chronic physical illness.     

Emotions,coping and the need for support in families of children with cancer: a model for psychosocial care

In the case of childhood cancer, the personal threats are severe for both the child, the parents and other family members. For the child, there is the threat to physical integrity, safety, security, and above all, to life. For the parents, there is the threat of losing the child. However, a number of studies have shown that psychopathological disturbances are rarely found in children with cancer or their parents. We may conclude from this that most children and parents use coping strategies that protect them from developing psychopathology. In organising support for families with a child with cancer, much can be learned from children's and parents' perceptions and reactions. When problems of adjustment arise, a thorough analysis of how children and parents perceive their situation, as well as an extensive analysis of their coping efforts, is necessary to direct effective supportive actions. A psychosocial support model is proposed which can be helpful in interpreting these emotions and coping strategies.     

Children With Chronic Physical Disorders: Maternal Reports of Their Psychological Adjustment

Advances in biomedical science have resulted in dramatic improvementsin the medical care of chronically ill and handicapped children.Past measurement problems have resulted in a lack of clarityregarding the psychological adjustment of these children. Themothers of 270 chronically ill and handicapped children wereadministered the Child Behavior Checklist in an attempt to identifypatterns of behavioral functioning across six pediatric chronicdisorders: juvenile diabetes, spina bifida, hemophilia, chronicobesity, juvenile rheumatoid arthritis, and cerebral palsy.In general, it was found that children in all chronic disordergroups were perceived by their mothers as evidencing on theaverage more behavioral and social competence problems thanexpected based on norms for children in general. However, theirbehavioral and social adjustment was reported as better thanthat of a normative sample of children referred to mental healthclinics. There were essentially no differences between childrenwith different chronic disorders in terms of behavior problemsand social competence. The results were taken to support theview that these children were as a group at risk for adjustmentproblems. They were also discussed in terms of the noncategorialapproach, which suggests that similar psychosocial challengesare faced across pediatric chronic physical disorders.     

Significance and rationale of studies of health-related quality of life in anaphylactic disorders

PURPOSE OF REVIEW: Until recently, quality-of-life measures were only used in allergic diseases with ongoing symptoms, such as asthma and rhinoconjunctivitis. Anaphylaxis is a chronic disease without ongoing physical symptoms, but the problems concerning quality of life are related to the continuous vigilance required to prevent accidental exposure. This raises specific issues concerning the validation of quality-of-life instruments. RECENT FINDINGS: The preferred independent measure for validation generally is an objective measurement of the severity of disease (e.g. spirometry in asthma). In patients suffering from anaphylaxis, the perceived expectation of what will happen following exposure can be used as the key independent measure. Recently, a specific instrument measuring this expectation (the 'Expectation of outcome' questionnaire) has been developed, and successfully used in insect-venom anaphylaxis. SUMMARY: Also, in diseases without ongoing symptoms like anaphylaxis, quality of life can be measured and the disease-specific instrument validated. It is to be expected that many new instruments will be developed in the coming years to address important issues in anaphylaxis. They may provide a better understanding of the major problems of certain patient subgroups and may give direction to the kind of information that should be addressed and what kind of interventions could be important and whether they are useful or not.     

Families of chronically ill children: a systems and social-ecological model of adaptation and challenge

A family systems model is presented for understanding adaptation and coping in childhood chronic illness. The importance of a systems perspective in work with children and families who may not display psychopathology is stressed. A general overview of systems and social-ecological theories relevant to children with chronic illnesses and their families is presented. Literature on stress and coping in these families is reviewed, then some of the unique issues that merit consideration in this area of research and intervention are examined. Finally, the importance of these models for responding to the growing number of families with children with AIDS is discussed.     

Models of adjustment to chronic illness: using the example of rheumatoid arthritis

There are a number of theoretical frameworks that attempt to explain how individuals may adjust to threats to health and serious physical illness. The three major paradigms that attempt to organize key components of health and adaptation to illness include the following: the biomedical model which emphasizes disease; psychological models of adaptation to illness; and biopsychosocial models with the latter two emphasizing health, functioning, and well-being. Each of these three major paradigms, including biomedical, psychosocial, and biopsychosocial frameworks, is discussed and critiqued in turn, and contributions and theoretical issues in terms of adjustment to chronic illness, particularly rheumatoid arthritis (RA), are highlighted. Furthermore, a biopsychosocial framework for conceptualizing adjustment to physical illness is proposed that incorporates elements from key existing biomedical and psychosocial models of adaptation to chronic physical health issues.     

Social Behavior as a Predictor of Adjustment Among Three-Year-Olds

This short-term longitudinal study examined whether social behavior among 100 three-year-olds newly enrolled in nursery school would predict their adjustment. We observed social behavior in three 20-min free-play periods at the beginning of the academic year. Teachers' evaluations of emotional, social, and learning functioning assessed children's adjustment at the end of the academic year. We found observed social behavior to predict later adjustment problems. At the year's inception, children who were less adjusted at year's end tended to wander around unoccupied, to be deficient in verbally initiating and sustaining contact, and to display physical aggression. They were also more likely to display reduced positive affect and to take the role of onlookers. The present findings parallel those among older children, mainly emphasizing sociometric methods. We discuss the clinical and methodological ramifications of the results, with particular emphasis on the need to distinguish issues of isolation versus engagement but also on qualities within these broader categories.     

Correcting physical activity energy expenditure for body size in children

Being able to compare the energy cost of physical activity across and between populations is important. However, energy expenditure is related to body size, so it is necessary to appropriately adjust for differences in body size when comparisons are made. This study examined the relationship between the daily energy cost of activity and body weight in 47 children aged 6-10 years. Log-log regression showed weight1.0 to be an inappropriate adjustment for activity energy expenditure in children, with a more valid adjustment being weight0.3. Clearly, both weight dependent and non-weight dependent activities are part of everyday living in children. This balance influences how energy expenditure is correctly adjusted for body size. Investigators interpreting data of energy expenditure in children from children of different body sizes need to take this into consideration.     

Sleep problems and fatigue in chronically ill women

The objective of this study was to understand the quality and quantity of sleep in women with multiple sclerosis (MS) or rheumatoid arthritis (RA), who also had young children, and how their sleep behaviors were associated with their fatigue. A cross-sectional sample of mothers with MS and RA and a well comparison group completed mailed surveys. Participants included 103 mothers with MS, 68 mothers with RA, and 91 well mothers. Mothers answered questions about their sleep, fatigue, pain, and depression. Women with chronic illnesses reported more problems going to sleep than did well women, with pain, depression, or both as significant covariates. Women with chronic illnesses reported that their sleep was interrupted less often by their children than did well women. Sleep quality and quantity were worse for women with RA who were experiencing a flare. Mothers with chronic illnesses experienced more sleep problems, which was associated with their pain and depression.     

Transactional Patterns of Child, Mother, and Father Adjustment in Insulin-Dependent Diabetes Meelitus: A Prospective Study

Utilized both interview and self-report methods to examine transactionalpatterns of child, mother, and father adjustment in a sampleof children and adolescents with insulin-depenedent diabetesmellitus (IDDM). Overall, levels of child and parental adjustmentwere relatively stable over the 1-year study period. Regresionanalyses revealed taht increased in father', but not moyhers',distress over time contributed significant incrmental varianceto poorer subsequent children's adjustment, after controllingfor demographic (age, genter, and SES) and disease parmenter(illness duration and metabolic control). Decline in fathers'adjustment was not significanly associated made significant,independent contribution to predicting subsequent fathers' adjustment.Findings illustrate the transaction nature of reletionship thatexist in families of children with IDDM and underscope tje impotanceof family system or biobehavioral family treatment approackerin the clinical management of children with chronic illnesses     

Individual Differences in Children's Reactions to Divorce

Children from families undergoing parental separation or divorce were interviewed about their own reactions and adjustment to this disruptive event. The children's mothers were also asked to report on their own reactions, as well as their children's. A subgroup was observed in a play session. Data were used to examine the factor surrounding children who manifested more behavior problems and more recent physical illnesses. Mothers of children who exhibited more behavior problems reported more mood disturbances; if this group consisted of boys, they engaged in less interactive play. Illness had opposite relationships with other variables for boys and girls; boys with more illness had more interactive play sessions with their mothers, whereas girls with more illness had less interactive and more noncontingent play periods. Results are discussed in terms of the different meaning that stress reactions have for both boys and girls and their mothers.     

Online self-management interventions for chronically ill patients: Cognitive impairment and technology issues

IntroductionAs the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully.ObjectivesTo review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies.MethodsThis study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management.ResultsDisease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management.ConclusionPatients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient–caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies.     

The adjustment to diabetes of school‐age children with psychological adjustment problems

Objective: To determine whether diabetic children with psychological adjustment problems have greater difficulties in specific areas of disease adaptation than their welladjusted diabetic peers by comparing their diabetes‐related adjustments in the family, school and peer environments. Method: Mothers of 47 school‐age preadolescent children with diabetes completed a standardized assessment of general psychological functioning. Children with psychological adjustment problems were then compared with children who did not exhibit problems along the following dimensions: their demographic and medical profiles, maternal diabetes knowledge, associations between general psychological functioning and diabetes control, and the quality of their diabetes adjustment. Results: No differences were found between children with psychological adjustment problems and their better‐adjusted peers along any of the demographic or health status variables tested or in maternal diabetes knowledge. However, children with adjustment problems were more likely to receive visits from the hospital's home‐care team and to be absent from school. Also, for children with psychological difficulty, indices of diabetes control and general psychological functioning were related, and the nature of this relation differed across the school and family environments. In addition, poorer psychological adjustment was associated with diabetes‐specific problems in both mother and child. These included individual adjustment problems such as feeling different, relationship difficulties with family and peers, and difficulties with the treatment protocol, in particular, with the dietary regime. Conclusion: These findings are considered in relation to (1) the importance of multi‐method techniques in research which concerns adjustment to diabetes, in particular the need to use both psychological and disease‐specific instruments, and (2) clinical evaluations and interventions for children with diabetes and their families.