Psychosocial adjustment in children with kidney disease

Objective: To examine family environment, levels of parentingstress, and child behavior problems in children with one ofthree kidney diseases compared to healthy children and to examinepredictors of psychological distress in the full sample. Method: Parents of children with steroid sensitive nephroticsyndrome, chronic renal insufficiency, or kidney transplant (n = 41) were compared to 34 healthy children of similar demographic characteristics. Results: Mean scores on family functioning, parenting stress,and child behavior were within normal limits. Family environment variables significantly predicted child behavior and parentingstress for parents of ill and healthy children. Qualitativeresponses provided insight into developmentally specific stressorsand intervention needs in the illness groups. Conclusions: These data indicate that long-term survivors ofkidney disease function similarly to demographically matchedpeers and that the family environment may buffer stress causedby illness. Specific concerns raised by parents in the kidneydisease groups indicate the need to appropriately assess andintervene with this understudied population.     

Psychological adjustment in caregivers of school-age children infected with HIV: stress, coping, and family factors

OBJECTIVE: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease. METHODS: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment. RESULTS: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment. CONCLUSIONS: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment.     

A systematic review of interventions for family caregivers who care for patients with advanced cancer at home

ObjectiveTo examine the characteristics of interventions to support family caregivers of patients with advanced cancer.MethodsFive databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home.ResultsA total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures.ConclusionsMost studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers’ physical health.Practice implicationsGiven caregivers’ needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer.     

The Highly Structured Climate in Families of Adolescents With Diabetes: Functional or Dysfunctional for Metabolic Control?

Objective: Compare changes in perceived family climate overtime in families with healthy adolescents and families withadolescents with diabetes and analyze the links to metaboliccontrol. Method: In a total of four annually conducted surveys, 89 Germanadolescents with diabetes and 106 healthy adolescents as wellas their parents completed the Family Environment Scale (FES).Metabolic control was determined by physicians' reports of adolescents'hemoglobin (HbA,) levels. Results: Compared to families with healthy adolescents, familiescaring for an adolescent with diabetes portrayed their familyinteractions as considerably more structured and less cohesiveand stimulating. Family climate was not associated with metaboliccontrol and varied little with time, illness duration, and adolescents'gender. Conclusions: The findings suggest that continued parental monitoringis necessary for good metabolic control. However, a balancemust be found between medical adaptation to illness and theadolescent's developmental needs.     

Psychological Factors Affecting Reported Pain in Juvenile Rheumatoid Arthritis

Examined the extent to which psychological variables are correlatedwith pain reported by children with juvenile rheumatoid arthritis(JRA). In a hierarchical multiple regression analysis with painas the dependent variable, four psychological measures of childand family functioning resulted in a significant increase inR² = .31, p < .0001, after the effects of disease characteristicswere considered. Greater emotional distress in the child, greateremotional distress of the mother, and greater family harmonywere related to higher reported pain. Findings suggest thatmore attention should be given to nonpharmacological aspectsof pain and pain management in children with JRA.     

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.     

Development and validation of the Psychological Adaptation Scale (PAS): Use in six studies of adaptation to a health condition or risk

Objective

We introduce The Psychological Adaptation Scale (PAS) for assessing adaptation to a chronic condition or risk and present validity data from six studies of genetic conditions.

Methods

Informed by theory, we identified four domains of adaptation: effective coping, self-esteem, social integration, and spiritual/existential meaning. Items were selected from the PROMIS “positive illness impact” item bank and adapted from the Rosenberg self-esteem scale to create a 20-item scale. Each domain included five items, with four sub-scale scores. Data from studies of six populations: adults affected with or at risk for genetic conditions (N = 3) and caregivers of children with genetic conditions (N = 3) were analyzed using confirmatory factor analyses (CFA).

Results

CFA suggested that all but five posited items converge on the domains as designed. Invariance of the PAS amongst the studies further suggested it is a valid and reliable tool to facilitate comparisons of adaptation across conditions.

Conclusion

Use of the PAS will standardize assessments of adaptation and foster understanding of the relationships among related health outcomes, such as quality of life and psychological well-being.

Practice implications

Clinical interventions can be designed based on PAS data to enhance dimensions of psychological adaptation to a chronic health condition or risk.     

Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

IntroductionUpsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.MethodsPRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.ResultsThe review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.ConclusionOptimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.Practical ImplicationsA paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.     

Concepts of Illness in Icelandic Children

Objective: To investigate the development of illness conceptsamong healthy Icelandic children. Methods: Participants were 68 schoolchildren, 6–7, 10–11,and 14–15 years of age, and their parents. Cognitive developmentallevel and understanding of physical illness were assessed withina Piagetian framework. In addition, illness experience and illnessbehaviors (Child Illness Behavior Questionnaire) were assessed. Results: Results were consistent with previous studies in thatthe development of illness concepts among Icelandic childrenwas consistent with Piaget's theory of cognitive development.No relation was found between illness experience and understandingof illness. A more mature understanding of illness was relatedto willingness to report the onset of illness. Conclusions: The results suggest that findings from previousstudies may be generalized to a broader population.     

Diabetes mellitus patients' family caregivers' subjective quality of life

OBJECTIVES: To assess the subjective quality of life (QOL) of family caregivers of Sudanese type-1 and type-2 diabetic outpatients, using the WHO 26-item QOL instrument, compared with a general population sample; and to examine the factors associated with caregiver QOL. METHOD: Responses of caregivers of 105 outpatients with type-1 diabetes and 135 with type-2 diabetes were compared with 139 general population subjects. RESULTS: Caregivers were satisfied with the content of items related to general social supports. Type-1 caregivers had significantly lower QOL scores than type-2 caregivers and the general population. Parents and siblings had lowest scores compared with other family groups. Caregivers scored higher than patients. Patients' age and duration of illness, and caregivers' education, marital status and state of health were positively associated with caregiver QOL. Caregivers' QOL was predicted by their appraisal of patients' QOL. CONCLUSIONS: Caregivers who were sick, younger, single, less educated and caring for patients with more recent illness appeared relatively vulnerable. Clinicians should be interested in the dynamics of the family caregiving situation--as it impacts QOL--and in promoting caregiver awareness of diabetes in order to enhance the caregiving role, quality of care and QOL.     

The role of hope in adaptation to uncertainty: The experience of caregivers of children with Down syndrome

Objective

The goal of this study was to investigate the relationships between perceived uncertainty, hope, and adaptation in caregivers of children with Down syndrome (DS).

Methods

A total of 546 caregivers were recruited from local and national DS groups and from a DS clinic list. A cross-sectional survey examined caregivers’ levels of perceived uncertainty, hope, and adaptation. The hope that caregivers had for their child was also measured.

Results

Uncertainty, hope and adaptation were all significantly correlated, with uncertainty and hope independently predicting caregiver adaptation. Caregivers’ motivation to reach goals for their child was higher than their ability to think of ways to meet those goals, and their lessened ability to think of ways to reach goals was significantly related to decreased adaptation levels.

Conclusion

Findings from this study suggest that having hope in the face of uncertainty is important in adaptation but that caregivers struggle with having hope related to thinking of ways to reach goals for their child.

Practice implications

The results of this study indicate that perceived uncertainty and hope may be important targets for improving psychological well-being. Interventions that assist caregivers in setting and attaining appropriate goals may be of particular interest.     

Anticipatory grief of spousal and adult children caregivers of people with dementia

Background

Anticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes. Previous studies showed different patterns of AG between spousal and adult children caregivers of people with dementia (PWD) at different stages; however, the levels of such grief are not yet compared. The findings in Western studies are very limited, and inconsistencies have also been found in Asian studies.

Methods

One hundred and eight primary caregivers (54 spousal and 54 adult children) of community-dwelling PWD were recruited from elderly community services sectors in Hong Kong, China through quota sampling. The demographics, AG (measured by the Marwit-Meuser Caregiver Grief Inventory-short form), subjective caregiver burden, and well-being of the participants were assessed. A Functional Assessment Staging Test was used to grade the stages of dementia of the PWD. In this study, those in stages 4 and 5 were regarded as being at an earlier stage, and those in stages 6 and 7 at a later stage of dementia.The Mann-Whitney U-test and the Chi-square test were used to compare the variables between spousal and adult children caregivers, and the Kruskal–Wallis test was used to compare the outcomes among the sub-groups (spousal caregivers caring for relatives with earlier/later stage dementia; and adult children caregivers caring for relatives with earlier/later stage dementia). A post-hoc analysis was also conducted to identify differences between the sub-groups. Pearson’s correlation was performed to investigate the bivariate relationships among AG, subjective caregiver burden, and well-being.

Results

The results showed that spousal caregivers caring for relatives in a later stage of dementia experienced the highest level of AG and subjective caregiving burden, as compared with spousal caregivers caring for relatives in an earlier stage of dementia and adult children caregivers. Well-being was significantly negatively correlated with AG and subjective caregiver burden, while AG was also significantly correlated with subjective caregiver burden.

Conclusion

This study found that spousal caregivers of relatives in a later stage of dementia have significantly higher levels of AG, warranting special attention and extra support from palliative professionals.

     

Psychological Adjustment of Adolescents With Sickle Cell Disease: Relations With Demographic, Medical, and Family Competence Variables

Objective: Investigate the hypothesis that family competencein addressing challenges associated with sickle cell disease(SCD) contributes to adolescents' adjustment. Method: During routine clinic appointments, 80 adolescents (Mage = 14·4 years) and their parents independently completedthe Self-Report Family Inventory (SFI), which assesses familycompetence, and measures of adolescent adjustment problems.Information related to disease severity was obtained from clinicfiles. Results: Regression analyses controlling for demographic andmedical variables revealed that higher family competence wasassociated with fewer internalizing and externalizing behaviorsby the adolescent; these relations were particularly true foryounger adolescents and for girls. Parental reports of somaticcomplaints in girls were predicted by parental ratings of familycompetence. Discussion: Interventions for adolescents with SCD should befamily-centered and should focus on strengthening the family'sability to manage stressors associated with parenting an adolescentwith a chronic 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.     

Effects of Maternal Intelligence, Marital Status, Income, and Home Environment on Cognitive Development of Low Birthweight Infants

Objective: To examine direct and mediated effects of maternalIQ, marital status, family income, and quality of the home environmenton the cognitive development of low birthweight infants. Methods: Secondary analyses on a large dataset using hierarchicalregression identified factors correlated with cognitive outcomesin children at 3 years of age who were bom at low birthweight. Results: Maternal IQ was a critical variable, because it washighly correlated with child IQ and because maternal intelligenceinfluenced patterns of relationships among other predictor variablesincluding marital status, income level, and home environmenton child IQ. Analyses revealed that effects of these variableson child IQ interacted with maternal IQ. Conclusions: Early childhood intervention programs should targetthose low birthweight infants most at risk for impaired cognitivedevelopment. Children at greatest risk are those living withunmarried, low IQ mothers.     

Development and validation of the parent experience of child illness

OBJECTIVE: To develop a measure of parent adjustment related to caring for a child with a chronic illness and to evaluate the reliability and validity of the measure with a group of parents of children with brain tumors. METHODS: One-hundred forty-nine parents of patients (age <1-17 years) diagnosed with a brain tumor were assessed using the 25-item self-report Parent Experience of Child Illness (PECI). Internal consistency, construct validity, and factor structure were assessed. RESULTS: Exploratory factor analysis yielded four theoretically coherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrow and Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from .72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scales show significant, positive correlations with scales from established measures of parent adjustment. CONCLUSION: The PECI augments the current literature by providing a brief measure of parents' subjective distress and perceived Emotional Resources, domains that are critical but understudied in children with chronic illness and their caregivers.     

Vasopressin,but not oxytocin,modulates responses to infant stimuli in marmosets providing care to dependent infants

In family-living species, the quality and patterning of caregiving is the product of an individual's role within the family (mother, father, sibling) and parental experience, both of which interact with underlying neurobiological substrates. Among these substrates are the nonapeptides vasopressin and oxytocin, which modulate maternal, paternal, and alloparental care. We used a nonhuman primate model of the “nuclear family,” the marmoset (Callithrix jacchus), to investigate relationships between caregiving experience, role within the family, and activation of either the oxytocin or vasopressin systems in shaping responsiveness to offspring. During two phases of offspring development (early infancy, juvenile), mothers, fathers, and older siblings were treated with vasopressin, oxytocin, or saline via intranasal application, and tested for responses to infant distress stimuli in a within-subjects design. Interest in infant stimuli was highest among marmosets that were caring for infants compared to those caring for juveniles, and parentally experienced marmosets were quicker to respond to infant stimuli than first-time caregivers. Moreover, marmosets treated with vasopressin showed enhanced responsiveness to infant stimuli compared to control stimuli only when caring for infants. Thus, in all classes of marmoset caregivers, vasopressin enhances responsiveness to infant-associated stimuli in caregivers during periods in which infant care is most crucial.     

Psychological characteristics associated with the onset and course of asthma in children and adolescents: A systematic review of longitudinal effects

Objective

To systematically review all available studies that investigated the longitudinal relationships between the psychological characteristics of children and adolescents suffering from asthma and those of their caregivers, and the onset and course of the asthma.

Methods

Relevant studies were identified using Medline, PubMed, and PsychINFO between 1970 and September 2009.

Results

Twenty studies matching inclusion criteria were reviewed. Six studies focused on child-specific psychological characteristics in relation to the onset and course of asthma. No compelling evidence was found for an association with asthma onset, but there was some evidence that the child's psychological characteristics can contribute to the subsequent course of asthma. Fourteen studies considered the effects of the psychological characteristics of the caregivers. Eleven studies found significant relationships between the psychological problems of caregivers and the subsequent onset and unfavorable course of the asthma in the child.

Conclusion

In pediatric asthma both the psychological characteristics of the affected children and their caregivers appear to contribute to the course and possibly also to the onset of the condition.     

Psychometric Properties of the Maternal Worry Scale for Children With Chronic Illness

Objective: To develop and evaluate the psychometric propertiesof a scale termed the Maternal Worry Scale (MWS) designed tomeasure maternal worry about children with chronic illnesses. Method: The sample consisted of 140 mothers of young children(mean age 8.2 years, 64% female) with a chronic illness (juvenilerheumatoid arthritis, diabetes, or sickle cell disease). Maternalworry, depression, and anxiety, as well as information aboutthe child's health and behavior, were assessed through structuredinterviews. Results: The MWS had good internal consistency (alpha =.94)and test-retest reliability (r =.84). Analyses indicated a single-factorstructure for the MWS. Estimates of construct validity werequite positive: the MWS was moderately correlated with parentaldepression (r =.34–.39), anxiety (r =.27), and maternalreport of child behavior problems (r =.25 [externalizing], r=.46 [internalizing]). Conclusions: The results suggest that the MWS is a useful, reliable,and valid scale for measuring worry of mothers raising childrenwith chronic health conditions.