Positive effects of a psycho-educational group intervention for children with a chronic disease: first results

OBJECTIVE: To determine the effectiveness of a psycho-educational group intervention for chronically ill children. METHODS: Based on principles from cognitive behavior therapy and information from previous research about children's experiences with coping with a chronic disease we developed an intervention to be used for children with different chronic diseases. The program, called Op Koers (OK), with six sessions for different age groups, was evaluated by standardised and researcher-developed psychological measures. RESULTS: A total of 109 patients participated in the study on the effects of the psycho-educational intervention. Improvements in behavioral-emotional outcomes, social competence, information seeking, relaxation and positive thinking were found both in short and medium term. Additionally, the sessions received positive appraisals. CONCLUSIONS: The program appears to have a significant and positive impact on chronically children. Further research is needed to establish the effects of the intervention. PRACTICE IMPLICATIONS: Beneficial effects can be expected from the implementation of a psycho-educational group intervention for children with heterogeneous chronic health conditions.     

Stressors and coping strategies described during hospitalization by chronically ill children

Compared chronically ill with acutely ill/injured children on types of stressors encountered during hospitalization, the coping strategies used to manage these stressors, and the relation between coping strategy use and distress. There was no difference between the acutely ill/injured and chronically ill groups in type of hospital problems selected-illness related (e.g., "my disease is getting worse"), pain related, or hospital related (e.g., lack of privacy). Acutely ill"injured children were more likely to use avoidant-coping strategies (e.g., distraction, self-blame, and wishful thinking) than chronically ill children. Coping strategies did not differ across the different types of hospital problems. However, the greater the distress generated by the problem, the more frequent use of selected-coping strategies (e.g., problem-solving, social support, and wishful thinking). Clinical implications of the findings are discussed.     

Developing interventions for chronically ill patients: is coping a helpful concept?

In this review, the role of coping in the development of psychosocial interventions for chronically ill patients is discussed. After summarizing the theoretical issues involved in the translation of the coping concept into an intervention, a review is undertaken of 35 studies concerned with the impact of interventions aimed at improving coping on patients' quality of life. These studies concern seven different chronic disease types (AIDS, asthma, cancer, cardiovascular diseases, chronic pain, diabetes, and rheumatoid arthritis) and show explicit consideration of attempts to manage illness in terms of coping to be rare. Many studies nevertheless address the equivalent of coping, namely behaviors and/or cognitions intended to deal with an illness situation appraised as stressful. The results of these studies are encouraging, although largely limited to the improvement of one or two particular coping strategies and problem-focused strategies in particular. It is argued that in order to expand on these initially positive findings, greater and more explicit consideration should be given to the potential of the coping concept for intervention with the chronically ill. The appraisal of stressful situations, the use of coping resources, and the strategic application of particular coping strategies should, for example, be given more careful consideration.     

Functioning among mothers and fathers of children with juvenile rheumatic disease: a longitudinal study.

Examined the adaptation of mothers and fathers of children with juvenile rheumatic disease on two occasions, 1 year apart, using 159 married couples at Time 1, and 111 of these couples at Time 2. A stress and coping model was tested in which parental functioning is determined by ongoing life stressors (patient and spouse dysfunction), family resources, and parents' illness-related coping. Mothers reported more depression than fathers did. However, poorer concurrent functioning among both mothers and fathers was explained partly by patients having more functional disability, pain, and psychosocial problems. In addition, spouse's dysfunction and the parent's use of avoidance coping were related to poorer parental adaptation, both concurrently and 1 year later. The implications of the findings for developing stress and coping models of parental adaptation to having a chronically ill child, and for intervention strategies with parents, patients, and families, are discussed.     

Brief report: Development and pilot testing of a coping questionnaire for children and adolescents with chronic health conditions

OBJECTIVE: The current paper describes the development, pilot testing, and item reduction process of a coping questionnaire for children and adolescents with chronic health conditions. METHODS: A pilot test with 188 children and adolescents was conducted in six European countries. Included in the test were children and adolescents (ages ranging 8-18 years) with various chronic health conditions-asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, or cystic fibrosis. Based on the focus groups with the children and adolescents and on expert consulting, items were developed and translated into the participants' respective languages. Data were analyzed according to predefined psychometric and content criteria. RESULTS: Analyses resulted in a selection of 29 out of 50 items for the final coping questionnaire with six domains: Acceptance alpha = .83, Avoidance alpha = .72, Cognitive-Palliative alpha = .69, Distance alpha = .70, Emotional Reaction alpha = .82, and Wishful Thinking alpha = .81. CONCLUSIONS: This study developed a short reliable international questionnaire to assess coping strategies of children and adolescents with chronic health conditions. Ongoing research will investigate the validity of this new coping questionnaire.     

Psychological Adaptation and Adjustment of Mothers of Children With Congenital Heart Disease: Stress, Coping, and Family Functioning

Objective: Investigate support for the transactional stressand coping model for mothers of children with congenital heartdefects, in accounting for the variance in maternal adjustment. Methods: Participants were 52 mothers of children recruitedfrom a university medical center. Measures included illnessvariables, cognitive processes (i.e., appraisals of stress,expectations, methods of coping, family functioning, and maternalpsychological adjustment). Results: Maternal adjustment was associated with high levelsof daily stress and palliative coping techniques and was notsignificantly associated with severity of the cardiac defect.Together, the variables of the model accounted for approximately38% of the variance in maternal adjustment. Conclusions: The findings are in accord with previous researchamong other chronically ill populations in suggesting an associationbetween stress, coping, and maternal adjustment. Within thelimitations of the study, the data were interpreted to supportthe utility of theoretical models in identifying areas in needof intervention across chronic illness groups.     

Knowledge and attitudes of high school teachers towards pupils suffering from chronic diseases

Fifty-eight high school teachers participated in a study about their knowledge and attitudes concerning chronic disease in children and adolescents. The level of knowledge of the 58 teachers was 62%. The head teachers did not have a higher score for their knowledge (63.3%) as compared with vocational teachers (60.3%). The presence of chronic diseases among children of staff teachers correlated with higher knowledge. Head teachers did not show a more tolerant attitude toward pupils with chronic diseases than the vocational teachers (14.9% vs. 13.7%). Ninety percent of teachers are ready and willing to spend extra time teaching their chronically ill pupils. The head teachers meet more frequently with chronically ill pupils, as well as with their parents, than do vocational teachers. All teachers believe and expect that they should know details about the pupil's chronic condition; more head teachers than vocational think it is important and beneficial if other pupils in class would know about the chronic condition and handicaps of the specific pupils in their class. Three quarters of the teachers consider it important and mandatory to increase awareness of chronic disease and disability in the school setting.     

Assessment of Depression in Children with Cancer

An item analysis of the Children's Depression Index (CDI) wasconducted for 454 children and adolescents in order to examinedifferential reporting of depression by medically ill pediatricpatients. The samples compared were normal schoolchildren, inpatientsin a child and adolescent psychiatric hospital, and childrenwith cancer. Results indicated that the ill children reportedless depression than the psychiatric patients or normal controls.It is hypothesized that the children with cancer may be usingdenial as a coping mechanism. In addition, children with cancerendorsed a different pattern of items than did the normal childrenor psychiatric patients. In particular, somatic items and itemsconcerning self esteem did not discriminate between depressedand nondepressed children in the cancer groups. The resultsindicate that although the CDI is a valid measure of depressionin chronically ill children and adolescents, the test must beevaluated differently for this group.     

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.     

The Effect of Fantasy Facilitation of Anxiety in Chronically Ill and Healthy Children

Fantasy may be an effective coping mechanism by which chronicallyill children can deal with the anxiety aroused by the stressof their diseases. In order to explore this hypothesis, 26 chronicallyill and 26 healthy children were assigned randomly to eitherfantasy facilitation or attention control treatment conditions.These interventions were carried out in the home by each child'smother under supervision of the first author. Anxiety was assessedbefore and after treatment. Chronically ill children were significantlymore anxious than the healthy children on pretreatment measuresof anxiety. The fantasy facilitation treatment was effectivein reducing anxiety for both groups of children. The attentioncontrol condition resulted in no change in anxiety level. Implicationsfor psychological intervention with medically ill children,as well as for theories of coping, are discussed.     

Adaptive tasks, coping and quality of life of chronically ill patients: the cases of Parkinson's disease and chronic fatigue syndrome

This article is a report of a larger study on the relationship between adaptive tasks, coping and quality of life, taking Parkinson's disease and chronic fatigue syndrome (CFS) as examples. The concept of adaptive tasks or disease-related stressors testing the adaptive capacities of chronically ill patients (N=134) was explored by applying the method of concept mapping. Results show that patients both with Parkinson's disease and with CFS generally refer to the same themes when asked for the adaptive tasks their disease brings about. However, the actual contents of these adaptive tasks differ as well as their impact on coping and quality of life. In the case of patients with Parkinson's disease, objective disease characteristics appear to be more important in predicting quality of life than in the case of patients with CFS, whose evaluation of adaptive tasks is predictive of quality of life.     

Factors Predicting Distress Among Caregivers to Children with Chronic Medical Conditions

Explored informant differences and assessed the importance ofsociodemographic factors, child health status characteristics,and caregiver burden to variability in psychological symptomsamong caregivers to 116 children with chronic medical conditions.Important informant effects were found. Caregiver-reported,but not physician-reported, burden was an important predictor.Severity of illness, whether rated by physician or caregiver,had little predictive effect whereas child impairment predictedgreater distress, independent of sociodemographics. Lower familyincome and female child sex predicted caregiver distress independentof other variables. Even among families with higher income,those with the lowest income report much higher distress. Resultsare discussed in terms of the importance of informant choiceand the use of sociodemographics as primary rather than controlvariables in studies of the families of chronically ill children.     

The Stress of Being Chronically Ill: From Disease-Specific to Task-Specific Aspects

The assumption that disease-related stressors are exclusive for particular diagnoses characterizes many studies of chronically ill patients. In this study the perceptions of 1305 patients from 10 different chronic disease categories were compared with respect to a number of important stressors. Differences were found in the amount and type of stressors experienced, but these differences could not solely be explained by type of disease. Personal characteristics such as age, sex, education level, living situation, and illness duration were also important in determining the degree and type of stress experienced. The implications of these findings for stress/coping research as well as the clinical implications are discussed.     

Development of a Brief Coping Checklist for Use with Pediatric Populations

Although the process of coping and utilization of coping strategieshas received widespread attention in the adult literature, thereis a relative dearth of information on these processes in childrenand adolescents. As the importance of assessing and teachingcoping strategies becomes apparent in behavioral medicine withadults, such investigations need to be extended to pediatricpopulations. The present study describes the development ofa brief coping checklist. Preliminary psychometric investigationsconducted with healthy adolescents demonstrated adequate reliabilityat 3-day, 7-day, 14-day, and 10-week intervals and concurrentvalidity with previously established measures of coping. Theutility of the checklist with pediatric patients and in particularchronically ill children is also examined.     

Parental management of fear in chronically ill and healthy children

This study was undertaken to determine the impact of children's health status on parental management of fear and avoidance, as well as the relationship between parenting strategies and children's fear and anxiety levels. Thirty-one children with a chronic life-threatening illness, 30 children with chronic non-life-threatening conditions, and 28 healthy children, and their mothers, were studied. Children's health status, by diagnosis, was not a significant determinant of maternal fear-management strategies. For chronically ill children, clinical health status, in terms of illness course, prognosis, physical impairment, and time since diagnosis were related to maternal parenting strategies and to children's levels of medically related fears. For the sample as a whole, maternal fear-management strategies were related to child sex, socioeconomic status, and mothers' trait anxiety. These results are discussed in terms the interactive effects of child characteristics, health status, fear/anxiety, and parenting strategies.     

Dimensions of Family Functioning in Families With Chronically Ill Children: A Higher Order Factor Analysis of the Family Environment Scale

Carried out a higher order factor analysis of the Family Environment Scale (FES) with a sample of families of chronically ill children. Three factors were found: Supportive, Conflicted, and Controlling. Higher levels of the Supportive factor and lower levels of the Conflicted factor related to behavior problems in chronically ill children, attesting to the utility of these factors in predicting psychosocial outcome. These factors were replicated in similar factor analyses of normative FES data. The study extended previous research, which had neither clarified whether two or three higher order FES factors existed nor determined whether these factors generalized to different types of families.     

Parents' information needs about the treatment of their chronically ill child: a qualitative study

Effective information provision is a prerequisite for partnership between child patients, their parents and health professionals. OBJECTIVES: To explore the complexity of parents' information needs and how current information provision is evaluated. METHODS: Qualitative methodology using semi-structured interviews with 27 parents of 20 families with a chronically ill child, recruited at the paediatric department of a British district general hospital. RESULTS: The need for information varied greatly between individuals and over time, and commonly involved diagnosis, management plan and prognosis. However, most parents in this study experienced professional communication and information provision to be inadequate. Information provision appeared to be related to the diagnosis, the level of secondary care involvement and the extent to which parents were required to take responsibility for daily management of the child's condition. Parents' complex and shifting evaluations and responses point to the double-edged nature of information. Some parents actively sought out information, but resisting information, for fear of its potentially negative impact, was also noted to be a coping strategy. CONCLUSION: Parents of chronically ill children presented with a great variety of information needs, which was not always appreciated by healthcare professionals. PRACTICE IMPLICATIONS: This study highlights the need for good communication based on professional awareness of how parents understand and experience their child's illness, as well as the importance of sensitively individualising information provision to parents' needs so as to address their requirements but not to unnecessarily increase their anxiety or insecurity.     

Patient focus groups about nurse-led shared care for the chronically ill

Traditional care offered to chronically ill people does not succeed in bridging the gap between primary and secondary care in a way that suits chronic patients' needs. So-called nurse-led shared care may offer a solution, in which a specialised nurse practitioner plays a co-ordinating role at patient level. In this article two nurse-led shared care models for patients with diabetes mellitus type 2 and chronic obstructive pulmonary disease (COPD) are looked upon through the patient's eye. Joint focus groups are conducted in which patients judge the models according to their experiences and indicate the importance they attribute to quality issues. Most of them experience the shared care models as positive and prefer them compared to traditional care. The main quality aspect concerns the provision of information, although its performance needs improvement. The outcome indicates that the qualitative method of patient focus groups should become standard procedure in evaluating the shared care, supported by quantitative means.