Longitudinal Model Predicting Self‐Concept in Pediatric Chronic Illness

Although self‐concept has been identified as salient to the psychosocial adjustment of adolescents dealing with a chronic illness (CI), little research has focused on its predictors it. Given that depression and parent–child attachment have been linked to self‐concept in the population at large, the goal of this study was to evaluate these relationships longitudinally in a sample of adolescents with CI. Using participant data from the Mastering Each New Direction (MEND) program, a 3‐month psychosocial, family based intensive outpatient program for adolescents with CI, we employed multilevel modeling to test longitudinal changes in self‐concept, as predicted by depressive symptoms and parent–child attachment, in a sample of 50 youths (M_age = 14.56, SD_age = 1.82) participating in MEND. Both “time spent in the program” and decreases in depressive symptoms were associated with increases in self‐concept over time. Higher baseline levels of avoidant attachment to both mother and father were also associated with greater initial levels of self‐concept. Targeting depressive symptoms and supporting adaptive changes in attachment may be key to promoting a healthy self‐concept in pediatric CI populations. The association between avoidant attachment and higher baseline self‐concept scores may reflect differences in participants’ autonomy, self‐confidence, or depression. Limitations of the study include variability in the amount of time spent in the program, attrition in final time point measures, and the inability to fully examine and model all potential covariates due to a small sample size (e.g. power).     

Illness Identity in Adults with a Chronic Illness

The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one’s identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22–78 year old; n?=?276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17–81 year old; n?=?241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.     

Prospective Pilot Study of the Mastering Each New Direction Psychosocial Family Systems Program for Pediatric Chronic Illness

Psychosocial interventions for pediatric chronic illness (CI) have been shown to support health management. Interventions that include a family systems approach offer potentially stronger and more sustainable improvements. This study explores the biopsychosocial benefits of a novel family systems psychosocial intervention (MEND: Mastering Each New Direction). Forty‐five families participated in a 21‐session intensive outpatient family systems‐based program for pediatric CI. Within this single arm design, families were measured on five domains of Health‐Related Quality of Life (HRQL) self‐report measures; Stress, Cognitive Functioning, Mental Health, Child HRQL, Family Functioning. Both survey and biological measures (stress: catecholamine) were used in the study. Results from multivariate general linear models showed positive pre‐, post‐, and 3‐month posteffects in all five domains. The program effects ranged from small to moderate (η² = .07–.64). The largest program effects were seen in the domains of cognitive functioning (η² = .64) and stress (η² = .27). Also, between disease groups, differences are noted and future implications for research and clinical practice are discussed. Conclusions suggest that the MEND program may be useful in helping families manage pediatric chronic illnesses. Study results also add to the growing body of literature suggesting that psychosocial interventions for pediatric chronic illness benefit from a family systems level of intervention.     

The Role of Religious Beliefs in Coping With Chronic Illness

The authors examined the ways in which 40 women with chronic illnesses (rheumatoid arthritis, osteoporosis, multiple sclerosis, systemic lupus erythematosus, or a combination of these disorders) used religious beliefs as a means of coping with their illnesses, The participants, all between the ages of 28 and 79 years, were interviewed about the role religious beliefs played in their experiences and the ways in which they made meaning in their lives or coped with their illnesses. The majority of the women reported that religious beliefs were important in living with a chronic illness. In addition, more women who were identified as coping well with their illness reported strong religious beliefs, whereas the majority of women identified as poor copers reported that religion was unimportant or that they had no religious beliefs.     

Evaluation of a Family Systems Intervention for Managing Pediatric Chronic Illness: Mastering Each New Direction (MEND)

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness.     

Involving Family in Psychosocial Interventions for Chronic Illness

ABSTRACT— Interactions with close family members have consequences for the emotional and physical well-being of individuals who are dealing with a chronic physical illness. Therefore, inclusion of a close family member in psychosocial interventions for chronic illnesses is a logical treatment approach that has the potential to boost the effects of intervention on the patient and also benefit the family member. However, randomized, controlled studies indicate that such family-oriented interventions generally have small effects. The efficacy of these treatment approaches might be enhanced by targeting specific interactions that emerging research identifies as promoting or derailing healthy behaviors and by better incorporating strategies from family caregiver interventions. In addition, family-oriented interventions should be more fully evaluated, by assessing the benefits for both patients and family members. Future research in this area can tell us much about how and when to involve family in treatment of specific chronic illnesses and, in turn, may inform conceptual models of the impact of family interactions on health.     

Dealing with Chronic Illness in a Symbolic Way

Jean Leonard

Little children have shown me that old souls often dwell in young bodies and that regardless of age, color, or creed, we all dip into the same pool of intelligence. The very young exist on a feeling level and are therefore in close touch with this intelligence, empathizing the moment it manifests itself in others. Children, however, will only reveal their inner worlds in an atmosphere of complete trust where rules are fair and there is no fear of being blamed or compared to others. When such an environment has been created, even a little child can lead us. Twenty years ago, when I was running a pre-school for the children of American servicemen stationed in West Germany, I witnessed a transformative relationship that was so moving, I recorded it in my journal.     

Beyond the “Psychosomatic Family”: A Biobehavioral Family Model of Pediatric Illness

This article proposes a multilevel systems model of the interactive biological, psychological, and social processes in childhood illness. This heuristic model can organize the investigation of pathways and mechanisms by which these levels influence one another. A pivotal feature of this biobehavioral family model is the construct of responsivity, which is conceptualized at both family (interpersonal responsivity) and individual (biobehavioral reactivity) levels. Individual biobehavioral reactivity is proposed as a bidirectional pathway by which family patterns and disease processes influence one another. Illustrative clinical material and relevant research are presented with recommendations for future study. This model integrates individual and family-level theory and thus has the capacity to bridge the fields of psychosomatics, pediatrics, behavioral medicine, and family systems medicine.     

Blameless Guilt: The Case of Carer Guilt and Chronic and Terminal Illness

My ambition in this paper is to provide an account of an unacknowledged example of blameless guilt that, I argue, merits further examination. The example is what I call carer guilt: guilt felt by nurses and family members caring for patients with palliative-care needs. Nurses and carers involved in palliative care often feel guilty about what they perceive as their failure to provide sufficient care for a patient. However, in some cases the guilty carer does not think that he has the capacity to provide sufficient care; he has, in his view, done all he can. These carers cannot legitimately be blamed for failing to meet their own expectations. Yet despite acknowledging their blamelessness, they nonetheless feel guilty. My aims are threefold: first, to explicate the puzzling nature of the carer guilt phenomenon; second, to motivate the need to solve that puzzle; third, to give my own account of blameless guilt that can explain why carers feel guilty despite their blamelessness. In doing so I argue that the guilt experienced by carers is a legitimate case of guilt, and that with the right caveats it can be considered an appropriate response to the progressive deterioration of someone for whom we care.     

The Effects of Introducing Peer Support to Young People with a Chronic Illness

Peer support groups have been an increasingly popular way of limiting the adverse effects of life with a chronic illness for adolescents although few groups have been rigorously evaluated. This paper reports the findings of a realistic evaluation of a hospital based peer support program Chronic Illness Peer Support (ChIPS), in Sydney, Australia. We collected qualitative interview and focus group data from four participant groups; new ChIPS members, their parents, older members who had been in ChIPS for two or more years, and ChIPS co-ordinators past and present. Results of qualitative data have been aggregated and organised into three categories; program attendance: getting in and staying in; program outcomes for young people: personal growth and development; and social connection. Questionnaires were also administered to fourteen new ChIPS members but no significant changes in distress or self-esteem were recorded between the beginning and the end of the short study period. The ChIPS Introductory Program fulfilled its aim, entering young people with chronic illness into the peer support program. There was evidence of initial personal growth and development in those young people, with potential for enhanced social connection from ongoing participation in ChIPS activities.     

Stress and Chronic Illness: the Case of Diabetes

Globally, Type 2 Diabetes Mellitus (T2DM) is one of the most prevalent chronic illnesses. Managing T2DM is a major challenge now affecting the lives of around 200 million people. Even when medication, diet, and physical activity regimens are maintained, blood sugar levels might not be effectively controlled because stress triggers the release of sugar into the blood. This makes the management of stress an important adjunct to the treatment of T2DM. Stress includes both life stress, the major issues that people face in their lives, such as job loss, divorce, or death of a loved one, and daily hassles, smaller everyday problems, such as deadlines for work, traffic hold-ups, or family disagreements. The stress levels created by these events are exacerbated by the stress created by the demands of managing diabetes. In this paper, we first examine the evidence for the relationship between stress and poor blood sugar control in people with T2DM. Then, we consider research that has examined the impact of various stress management strategies on blood sugar level. Finally, we discuss some promising psychological techniques for managing stress that could be helpful for people with diabetes or pre-diabetes. We note the double benefit of physical activity, which directly assists in the metabolism of sugar from the blood and indirectly reduces acute stress and chronic stress reactivity, thus providing a buffer against the effects of stress for people with T2DM.     

The Role of Parental and Adolescent Attributions in Adjustment of Adolescents with Chronic Illness

Previous literature has demonstrated the separate contributions of parental attributions and adolescent attributions to psychosocial adjustment of adolescents with chronic illness. However, it is unknown whether parental attributions affect adolescents' mental health directly or indirectly by influencing the youths' attributional style. This study evaluated the direct and indirect (through adolescent attributions) effects of parental attributions on internalizing and externalizing problems of adolescents with chronic illness. Adolescents (N?=?128; M?=?14.7?years) diagnosed with cystic fibrosis or diabetes and their caregivers completed measures of attributional style and adolescent adjustment. Parents' optimistic attributions were associated with fewer adolescent internalizing and externalizing problems. These effects were partly mediated by adolescent attributions. These results suggest that targeting both adolescent and parent attributions may be important for improving adolescents' adjustment to a chronic illness.     

Total Recall: Treating Chronic Mental Illness as a Memory

The ideas outlined in this paper developed from three separate strands of my work as a therapist treating older people. Firstly, I was concerned with reducing the number of patients not benefiting from therapy. In keeping with Pinquart et al.'s (Am J Psychiatry 163:1493–1501, 2006) recent meta-analytic survey concerning the use of psychotherapy and medication, 50% of the depressed patients treated by my team failed to respond adequately. Secondly, the ideas grew out of my attempts to determine why different therapies with older people have often been shown to have equivocal beneficial impacts (Davies and Collerton, J Ment Health 6:335–344, 1997). Thirdly, I was interested in integrating the relevant neuropsychological features, particularly memory, into my therapeutic work. These three strands have led me to propose a pan-theoretical model of distress based on memory functioning and existing information processing perspectives (Teasdale and Barnard, Affect, cognition and change: Remodelling depressive thought, 1993; Power and Dalgleish, Behav Cogn Psychother, 27:129–142, 1996).     

Chronic Illness and the Life Cycle:A Conceptual Framework

This article provides a conceptual framework for thinking about the system created at the interface of chronic illness with the family life cycle. First, a psychosocial typology and time phases of illness schema is described as a necessary, preliminary step to create a common language that bridges the worlds of illness, individual, and family development. This schema organizes similarities and differences between diseases in a manner useful to psychosocial-developmental rather than biomedical inquiry. Then, drawing on several major life-cycle theories in the literature, key concepts (periods of transition, life-structure building and maintaining, centripetality, and centrifugality) are used in a complementary fashion to link these three lines of development. Equipped with these psychosocial languages, consideration is given to transgenerational aspects of illness, loss, and crisis, and the interwoven threads of illness, family, and individual development. Clinical vignettes are provided to highlight this conceptual framework.     

Personality Disorders in Older Adult Inpatients with Chronic Mental Illness

It has been hypothesized that some types of personality disorders tend to remit with age whereas others may become more prominent. The present study determined the prevalence and nature of 13 personality disorders with a self-report inventory (Coolidge Axis II Inventory) in an older group of chronically mentally ill inpatients (N = 30, mean age = 63 years) and a younger group of similar patients (N = 30, mean age = 39 years). All patients met DSM-IV criteria for either Schizophrenia, Schizoaffective Disorder, Bipolar Disorder, or recurrent severe Major Depression with psychotic features. The prevalence rate of personality disorders was high for both groups: 58% for the older sample and 66% for the younger group. The younger group was more likely to be diagnosed Antisocial, Borderline, Passive-Aggressive, Sadistic, and Schizotypal, but the groups were not different in the rates of Obsessive-Compulsive Disorder. This study supports the hypothesis that some personality disorders remit with age. However, no evidence was found to suggest that other personality disorders become more prominent in older adult psychiatric populations. Suggestions for future research are offered.     

Diabetes,Chronic Illness and the Bodily Roots of Ecstatic Temporality

This article studies the phenomenology of chronic illness in light of phenomenology’s insights into ecstatic temporality and freedom. It shows how a chronic illness can, in lived experience, manifest itself as a disturbance of our usual relation to ecstatic temporality and thence as a disturbance of freedom. This suggests that ecstatic temporality is related to another sort of time—“provisional time”—that is in turn rooted in the body. The article draws on Merleau-Ponty’s Phenomenology of Perception and Heidegger’s Being and Time, shedding light on the latter’s concept of ecstatic temporality. It also discusses implications for self-management of chronic illness, especially in children.

A Cost Analysis of Self-Management Programs for People with Chronic Illness

The soaring cost of health care is a national problem that needs response at multiple levels, including that of the community. Reducing or limiting health care costs through interventions that emphasize the self-management of health may promote broader health care coverage, better quality of health care, and a sense of control over one's health. Therefore, it behooves community psychologists to perform cost analyses when testing interventions for people in a community. The present study investigated the effects of social support and education interventions on psychosocial variables, health status, and health care costs in older people with osteoarthritis. Participants were 363 members of a health maintenance organization (HMO), 60 years of age and older, with osteoarthritis. Participants were randomly assigned to one of three intervention groups (social support, education, or a combination of both) or to a control group. The results indicated that feelings of helplessness decreased in the intervention groups but not in the control group. All groups showed increases in self-efficacy and overall health status. In addition, health care costs increased less in the intervention groups than in the control group. Cost analysis was used to demonstrate that the monetary savings of the intervention greatly outweighed the cost of conducting the intervention. It appears that interventions can limit health care costs while improving health and increasing feelings of control for older people with osteoarthritis. Further, this paper demonstrates how a cost-benefit focus can benefit community studies.     

Spontaneous Reports of Religious Coping by Patients with Chronic Physical Illness

Individuals undergoing the stress of physical illness often report the use of religious coping activities. This study compared the frequency of spontaneous reports of religious coping in three groups of patients including those with cancer preparing for a bone marrow transplant (n = 22), chronic pain (n = 36), and cardiovascular disease (n = 53). Participants were asked to respond to a written, open-ended question asking how they were coping with the challenges involved in their medical condition. The question asked them to list the resources, strategies, strengths, or behaviors that they found most helpful. No mention of religion or religious coping was included with the question. Of the 111 participants surveyed, 26.1% included religious coping in their responses. The relative percentage of religious coping was calculated by dividing the total number of coping responses by number of religious responses. Mean percentage of religious coping was highest in participants preparing for a bone marrow transplant (22.9%), followed by the cardiac group (5.7%), and the chronic pain group (3.8%).