Counseling children with chronic physical illness

We examine the needs of children with chronic physical illness and discuss how their needs may be met by counseling. Initially counseling is defined and boundaries with other activities established. Issues involved in counseling children with chronic illness are outlined and children's special needs regarding psychosocial issues discussed, with examples relating to asthma, cystic fibrosis, diabetes and epilepsy presented. Finally recommendations are made regarding counseling services.     

Patient-centredness in chronic illness: what is it and does it matter?

The evidence as to whether patient-centredness is associated with beneficial physical and psychological outcomes is inconsistent. This review of published research on health care communication in chronic illness investigates whether (i) studies of patient-centred consultations use distinctive concepts, (ii) different concepts are differentially associated with health outcomes. Studies of patients with a chronic illness consulting a health professional were included if they measured health professional-patient interaction and a physical or psychological outcome. Thirty studies were identified, falling into two, reliably distinct, categories. In the first, health professionals took the patient's perspective and in the second, they sought to "activate" the patient. The 10 studies taking the latter approach were more consistently associated with good physical health outcomes than were the 20 studies taking the former approach. The suggestion that different types of patient-centredness have different associations with physical health outcomes should be investigated further in experimental studies.     

The Association of Illness Severity,Self-Reported Cognitive Impairment,and Perceived Illness Management with Depression and Anxiety in a Multiple Sclerosis Clinic Population

Within the multiple sclerosis (MS) population, high prevalence of psychiatric concerns, such as depression and anxiety, has been well documented. The purpose of this study was to examine factors contributing to higher depression and anxiety levels in a sample of 82 patients utilizing MS clinic services. Independent variables included MS physical severity, self-reported cognitive impairment, and perceived illness management, respectively. Results from hierarchical regression analyses indicated that depression was related to the physical severity, self-reported cognitive impairment, and perceived illness management variables. Anxiety was also related to the physical severity and self-reported cognitive impairment variables but not to the perceived illness management ones, suggesting that depression and anxiety symptoms may involve somewhat different processes within MS. The findings of this study support further clinical consideration and additional investigation of these variables in the treatment of anxiety and depression in an MS clinic population.     

Brief report: illness intrusiveness and adjustment among Native American and Caucasian parents of children with juvenile rheumatic diseases

OBJECTIVE: To investigate cognitive appraisal-adjustment relationships in Native American (NA) and Caucasian parents of children diagnosed with juvenile rheumatic diseases. METHODS: NA (n = 16) and Caucasian (n = 24) parents completed measures of disease status, illness intrusiveness, and adjustment; the rheumatologist provided estimates of disease severity. RESULTS: Hierarchical regression analysis revealed a moderating effect for racial group membership on the illness intrusiveness-parent adjustment relationship. Specifically, parent-perceived illness intrusiveness was more closely related to poorer adjustment among NA parents relative to Caucasian parents. Post hoc tests indicated that illness intrusiveness was significantly associated with poorer adjustment in NA parents, but was unrelated to parent adjustment in the Caucasian sample. CONCLUSIONS: Results highlight the importance of examining racial group differences in cognitive appraisal-adjustment outcome relationships. Results are discussed with respect to the need for incorporating cultural issues into pediatric chronic illness research and treatment.     

The concept of psychosomatic disorder.

The clinical concepts related to the assessment of psychosocial factors in the medically ill are reviewed, with particular reference to the DSM-III-R categories of adjustment disorders, psychological factors affecting physical conditions, and somatoform disorders. The clinical and heuristic value of the concepts of psychosomatic disorder and abnormal illness behavior is underscored.     

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.     

Cautions in using the Child Behavior Checklist: observations based on research about children with a chronic illness

The Child Behavior Checklist (CBCL) and the related instruments, the Teacher's Report Form (TRF) and Youth Self-Report (YSR), are frequently used in research assessing the behavioral adjustment of children. This paper describes some issues relevant to children with a chronic physical illness that should be considered when using these instruments. Salient problems include (a) possible bias in interpreting data concerning physical symptoms; (b) limited sensitivity to identify mild adjustment problems of the sort most often encountered in children with chronic physical illnesses; and (c) incomplete and potentially misleading assessment of social competence. When using these instruments investigators should also be aware of several general methodologic issues before collecting, analyzing, and interpreting data regarding children with chronic illnesses.     

Conceptions of Illness Causality in Hospitalized Children

Hospitalized children (n = 60) in three age groups (5, 7, 9years) were administered a number of tasks to explore theirconceptions of illness and health and to assess developmentof physical and social concepts. A significant age progressionwas observed with these concepts, involving a shift from global,undifferentiated, to increasingly abstract principles. Children'sconceptions of illness were also significantly related to performancein conservation, role taking, and physical causality tasks.The practical significance of this research in the context ofthe ill and hospitalized child is discussed.     

Single parents of children with chronic illness: an understudied phenomenon

OBJECTIVE: To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. METHODS: We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. RESULTS: While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. CONCLUSIONS: There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.     

Exploring the effectiveness of couples interventions for adults living with a chronic physical illness: A systematic review

ObjectivePartners have a significant role in a person’s ability to adjust to a chronic physical illness, which warrants their inclusion in couples interventions. However to deliver more specific, tailored support it is necessary to explore which types of couples interventions are most effective across certain chronic illness populations and outcomes.MethodsFive databases were searched using selected terms. Thirty-five articles met the eligibility criteria for inclusion.ResultsThe majority of studies were from the US, and most interventions targeted cancer populations. Couples interventions fell into two categories according to therapeutic approach; Cognitive Behavioural Skills Training (CBST) and Relationship Counselling (RC). When compared with a patient-only intervention or controls, CBST interventions effectively targeted behavioural, physical/somatic and cognitive outcomes, while RC more effectively targeted interpersonal outcomes.ConclusionCouples interventions can be more effective than patient-only interventions or controls across various patient and partner outcomes. Couples interventions tend to favour a skills-based or a relationship-based approach, which strongly influences the types outcomes effectively targeted.Practice implicationsOur findings suggest it could be therapeutically useful to integrate these two approaches to more holistically support couples living with chronic illness. We also identify the need to target understudied illness groups and ethnicities.     

The influence of parental distress on child depressive symptoms in juvenile rheumatic diseases: the moderating effect of illness intrusiveness

OBJECTIVE: To examine the role of children's illness-related cognitive appraisals in the parent-child adjustment relationship in a sample of children and adolescents with juvenile rheumatic disease (JRD). Specifically, we tested the moderating effect of children's perceived illness-induced barriers (i.e., illness intrusiveness) in the parent distress-child depressive symptom relationship. METHODS: Participants were 45 children and adolescents (ages 9-17) diagnosed with JRD. Children completed measures of depressive symptoms (Children's Depression Inventory), functional disability (Juvenile Arthritis and Functional Assessment Report), and illness intrusiveness (Illness Intrusiveness Scale-adapted for children); parents completed a brief measure of global distress (Brief Symptom Inventory). The pediatric rheumatologist provided functional disability ratings following a routine physical exam. RESULTS: Both increased parental distress and child illness intrusiveness were associated with greater child depressive symptoms. Direct effects were qualified by a significant Parent Distress x Illness Intrusiveness interaction. The influence of general parental distress on child depressive symptoms was enhanced under conditions of increased child-reported illness intrusiveness. CONCLUSIONS: Results support transactional conceptualizations of child adjustment to chronic illness. Findings also emphasize the need to examine the interaction of parent and child variables, particularly cognitive appraisals, in child adjustment. Results and treatment implications for children with JRD are discussed in terms of reinforcement theories of depression.     

Survival on home haemodialysis: its relationship with physical symptomatology, psychosocial background and psychiatric morbidity.

An entire group of 32 home dialysis patients from one hospital renal unit was assessed for psychiatric morbidity on a standardized interview of proven reliability. A rating of physical symptomatology and an enquiry into the childhood and psychosocial background were made at the same time. Psychiatric morbidity, physical symptomatology and a history of good relationships with both natural parents in childhood were inter-related. They were all related to survival on haemodialysis 3 1/2 years later. Survival was also associated with a coping spouse and full-time employment or housework by the patient. These findings are discussed in the light of current concepts of the psychosocial setting for physical illness.     

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 relationship of pathogenetic mechanisms to treatment in patients with pain

Pain is the somatic symptom par excellence, legitimizing more than any other the sick role and illness behavior. The functions and implications of pain are clearest in situations of acute illness or injury or in chronic, organically based conditions in which actual or threatened tissue damage is signaled by its report. Much greater complexity is found in a variety of clinical presentations (conversion hysteria, hypochondriasis, chronic pain syndromes, Briquet's syndrome, Munchausen's syndrome) in which pain may form part or all of the clinical picture. In such conditions the relationship of the patient's report of pain to other phenomena (tissue damage, physiopathology, perceptual and cognitive styles, personality type, individual and family psychodynamics, anxiety, depression, behavioral patterns, social and economic factors, cultural influences) is important in elucidating pathogenetic mechanisms of which several may be operating in any one case. Awareness of the existence and interaction of these mechanisms facilitates the development and integration of treatment approaches.     

Qualitative inquiries into social representations of health

Concepts of health and illness have been a major topic for social representations research. Whereas studies on cognitive representations of health and illness develop a general, decontextualized schema of illness, social representations research focuses on the diversity of lay concepts of health and illness and how health and illness are socially constructed in different contexts. Two qualitative studies about the social representations of health are presented. The episodic interview and theoretical coding were used to study health concepts of nurses and clerks in East and West Germany and among Portuguese and German women. Results in both studies show different forms of awareness of health as the core of the health concepts in the various groups. Social representations theory connects these differences back to the political and cultural backgrounds of the study participants.     

Cancer survivor adaptation model: conceptualizing cancer as a chronic illness

A model of cancer as a chronic illness is proposed as a new direction for quality of life research. In the cancer survivor adaptation (CSA) model, adjustment to cancer survivorship is a life-long process involving three interacting components. Personal context incorporates cancer survivorship and personal characteristics across biological, psychological, and social domains. The adaptation process involves a specific cognitive mechanism of change, where the ongoing appraisal of goals and world assumptions occur in the context of the cancer survivor's personal memories and sense of self. Finally, quality of life outcomes are viewed as multidimensional and personally weighted for importance, with expectations for both positive and negative physical, emotional, cognitive, and spiritual adjustments over time. Research and clinical implications are explored. © 2009 Wiley Periodicals, Inc. J Clin Psychol 65: 1–10, 2009.     

The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis

The study compared the different patterns of stress reported by mothers of children with either a chronic physical illness (cystic fibrosis), a chronic psychological disorder (autism), and children without a physical or psychological disorder. Twenty-four mothers from each of these three groups completed the Questionnaire on Resources and Stress Short Form (Holroyd & Guthrie, 1986). Each clinical group exhibited different patterns of stressful response consistent with the nature of the disorder and the requirements of care imposed on the families. Autism was found to contribute significantly more to family stress than did cystic fibrosis. The number of children in the family was not a significant variable. Implications for the development of family intervention programs are discussed.     

Executive dysfunction and cognitive impairment in a large community-based sample with Multiple Sclerosis from New Zealand: a descriptive study.

Multiple Sclerosis (MS) is one of the most common chronic diseases of the central nervous system, and in New Zealand an estimated 4000 people are currently affected. This study was conducted to examine executive functioning, memory and general ability in a community-based sample of 95 participants with MS. The sample included those with relapsing-remitting, secondary progressive, chronic progressive and benign MS with an average duration of illness of 11.8 years. Only 9% of the participants showed no indication of cognitive impairment with most exhibiting mild executive dysfunction across the range of shifting, inhibition, fluency and working memory categories. As this became more widespread, all other measures of cognitive ability and memory also showed evidence of deterioration, but in some, this may have been due to slowed information processing. Overall, there was a high degree of variability in the levels of performance and there was no 'typical' pattern of deficits associated with MS. Thus, a proportion of those living with MS may have to cope with noticeable and unpredictable cognitive decline in addition to their physical disabilities.