Cross-Cultural Disparities in Psychosocial Research with Individuals with Classical Congenital Adrenal Hyperplasia: A Scoping Review.

INTRODUCTION: There are increased calls to address psychosocial needs among individuals with classical congenital adrenal hyperplasia (CAH). However, cross-cultural disparities exist in treatment practices and psychosocial outcomes that impact the generalizability of evidence-based recommendations. To date, this disparity has not been quantified. The present scoping review uses a dual approach to contrast rates of CAH diagnosis with CAH psychosocial research rates across countries. METHODS: Six electronic database searches were conducted for: (1) CAH incidence/birth/prevalence rates; and (2) psychosocial research with affected individuals and their families. Two authors reviewed each abstract for inclusion criteria. RESULTS: Sixty-eight and 93 full-text articles, respectively, were evaluated for incidence and country. The countries/regions with the highest reported CAH rates are Thailand, Ghana, and India. Those with the greatest portion of psychosocial publications are the USA, Germany, and the UK. CONCLUSION: A discrepancy exists between those countries with the highest CAH rates and those publishing psychosocial research. Specifically, increased rates of CAH are seen in non-Western countries/regions, whereas most psychosocial research arises out of Western Europe and the USA. Due to cultural differences between these regions, increased global collaboration is needed to both inform psychosocial research and translate findings in ways that are representative worldwide.

Adapting Pediatric Medical Homes for Youth in Foster Care: Extensions of the American Academy of Pediatrics Guidelines.

This article provides recommendations for adapting the pediatric medical home (PMH) model for health care needs of youth in foster care. Recommendations are based on key informant interviews regarding experiences at an established PMH for youth in foster care. Major clinic recommendations include expanding the PMH framework to include proficiency in Medicaid billing, promoting true interdisciplinary care teams, improving care accessibility via phone consultation, providing a stable place for medical records to be housed, delivering services throughout stages of the child welfare case, incorporating all family members, and implementing trauma-informed practice. Preliminary evidence suggests that the PMH model of care may be ideal for addressing the complex and often underserved needs of youth in foster care and their families. The present recommendations provide a logistical framework for establishing a clinic that thoughtfully considers the unique needs of this population. Future research is needed to examine best practices for implementation.

The Role of Stigma in the Relationship Between Illness Intrusiveness and Adjustment in Adolescents and Young Adults: A Path Model.

OBJECTIVE: Adolescents/Young Adults (AYAs) with a chronic illness display elevated risk for poor psychosocial outcomes, yet relatively little is known about factors that place these individuals at risk. Illness intrusiveness is a known predictor of negative psychosocial outcomes in AYAs. Illness-related stigma, an understudied concept in this population, may also be a key contributor to increased intrusiveness. The present study sought to determine if higher levels of illness-related stigma would be associated with higher levels of depressive and anxious symptoms in AYAs with a chronic illness, and whether this relationship would be mediated by illness intrusiveness. METHODS: College students with a chronic illness completed measures of illness-related stigma, illness intrusiveness, and both depressive and anxious symptoms. RESULTS: A path model indicated that stigma was significantly related to illness intrusiveness, and illness intrusiveness was significantly related to depressive and anxious symptoms. Both indirect paths from stigma to depressive and anxious outcomes were significant. There were also significant direct effects of stigma on depressive and anxious outcomes. An additional path model was tested to assess anxious and depressive outcomes as multidimensional factors by evaluating the individual factors of both scales as outcomes. This model revealed similar results. CONCLUSIONS: Findings support previous research indicating relationships between stigma, illness intrusiveness, and negative psychosocial outcomes, with illness intrusiveness serving as a possible mediator between illness-related stigma and depressive and anxious symptoms.

Goal feedback from whom? A physical activity intervention using an N-of-1 RCT.

OBJECTIVE: Adolescents are not meeting the recommended guidelines for physical activity. Social support and self-regulatory skills are two factors known to impact physical activity and sedentary behaviour. The study sought to examine how targeting feedback as part of a self-regulatory process could increase physical activity, and the individual who should be providing the feedback. DESIGN: The study utilised an aggregated N-of-1 RCT which allows for an iterative process of intervention development, and examines variability within participants to answer the question for whom did the intervention work. Ten adolescents (ages 13-18) set a daily physical activity goal. Adolescents received a SMS text message providing feedback on goal attainment daily from a parent, peer, behavioural health specialist; or no text message (control). MAIN OUTCOME MEASURES: A bioharness heart rate monitor assessed heart rate as proxy for goal attainment. Adolescents also self-monitored their physical activity in the Calorie Counter and Diet Tracker by MyFitnessPalTM app (commercially available). RESULTS: Intervention demonstrated a significant effect for 30% of the sample in increasing MVPA (Mincrease = 52 min), with no significant effect on sedentary behaviour. CONCLUSION: A single occasion of text messaging from the right person can produce changes, however, careful consideration should be given to who provides the feedback.

Recommendations for the Establishment of Disorders/Differences of Sex Development Interdisciplinary Care Clinics for Youth.

PURPOSE: Provide recommendations for the development of an interdisciplinary care (IDC) clinic for the treatment of youth with disorders/differences of sex development (DSD). DSD consist of a group of complex congenital medical disorders in which the development of chromosomal, gonadal, or anatomical sex is atypical. Youth with DSD require care from multiple specialized healthcare disciplines, including several medical specialties, surgery, nursing, and mental health. METHOD: Recommendations are based on an interdisciplinary care clinic model that allows for a team of relevant professionals who share knowledge, ideas, and responsibility of care. The framework established in this article is based largely on experiences at an established DSD clinic, as well as observations of multiple clinics across the United States. RESULTS: Preliminary outcome data on clinic adherence to treatment protocol under an IDC model are provided. CONCLUSIONS: To meet the diverse healthcare needs of youth with DSD, comprehensive care clinics are recommended; however, few such clinics exist in the United States. Establishing new comprehensive DSD clinics can be challenging due to the highly unique treatment of DSD, but the current paper expands the literature available to guide clinic development in the United States.

Perceived barriers to care in a pediatric medical home: the moderating role of caregiver minority status.

OBJECTIVE: To examine the association of minority status to perceived barriers to care and health-related quality of life in families presenting to a Medical Home. METHOD: Fifty-three caregivers were classified as minority or nonminority caregivers based on self-reported race/ethnicity. Caregivers completed a measure of perceived barriers to care and child health-related quality of life. RESULTS: Minority caregivers reported more perceived barriers to care with regard to the pragmatics of obtaining health care. The association between perceived barriers to care and child health-related quality of life was moderated by minority status. Perceived barriers to care were only related to child health-related quality of life among minority caregivers. CONCLUSION: Minority families may have difficulties with the cost of health care or logistics of obtaining health care for their child. Perceived health care barriers may still exist within pediatric Medical Homes for minority caregivers and affect child health-related quality of life.

Caregiver demand and parent distress in juvenile rheumatic disease: the mediating effect of parent attitude toward illness.

Parents of youth with juvenile rheumatic diseases (JRD) often take on illness management responsibilities that can become burdensome, potentially resulting in poor parent adjustment outcomes. However, not all caregivers will experience increased distress as a result of variability in stress appraisals. The current study examined the role of parent illness attitudes in the relation between perceived caregiver demand and parental distress. Youth (N = 70) ages 7-18 years diagnosed with a JRD and their parents were recruited from a pediatric rheumatology clinic. Parents completed measures of caregiver demand, parental distress, and illness attitudes. Hierarchical regression revealed a relationship between caregiver demand and parental distress. A significant relationship was also found between caregiver demand and parent illness attitudes, as well as parent illness attitudes and parental distress. Thus, parent illness attitudes mediated the relationship between caregiver demand and parental distress. Techniques aimed at altering negative illness attitudes may help parents cope with their caregiving responsibilities.

Longitudinal assessment of maternal parenting capacity variables and child adjustment outcomes in pediatric cancer.

This preliminary investigation aimed to longitudinally examine parenting capacity variables, namely parental overprotection, perceived child vulnerability, and parenting stress and their relation to child adjustment in mothers of children on treatment for cancer. As part of a larger study, biological mothers (N=22) completed measures of parental overprotection, perceived child vulnerability, parenting stress, and child adjustment at Time 1 and a follow-up time point. Analyses were conducted to determine whether (1) levels of parental overprotection, perceived child vulnerability, and parenting stress declined from Time 1 to follow-up and (2) if Time 1 parenting capacity variables were associated with child adjustment at follow-up. Results revealed that parental overprotection, perceived child vulnerability, and parenting stress declined from Time 1 to follow-up, and levels of parental overprotection, perceived child vulnerability, and parenting stress at Time 1 were significantly related to child adjustment at follow-up. Collectively, the preliminary findings of this study indicate that mothers of children with cancer evidence improved parenting capacity over time. Furthermore, it seems that Time 1 parenting capacity variables are significantly related to later child adjustment.

Use of the Behavioral Assessment System for Children 2nd Edition: Parent Report Scale in pediatric cancer populations.

This study examined the use of the Behavioral Assessment System for Children-2nd Edition: Parent Report Scale (BASC-2; Reynolds & Kamphaus, Behavior assessment system for children, 2004) in a pediatric cancer population. Comparisons of scale scores were made between pediatric cancer participants and controls. Within group comparisons were also made between subtypes of pediatric cancer. Parents of 111 children and adolescents who had experienced pediatric cancer completed the BASC-2 as part of larger studies of parent-child adjustment to cancer. Scores on the BASC-2 for cancer survivors were compared to a matched control group. Results from MANOVA analyses revealed that children with cancer were categorized as evidencing more emotional and cognitive complaints compared to the control children. Notably, no significant within group differences emerged on the subscales with regard to cancer subtype. Although preliminary, these results suggest that the BASC-2 can identify the cognitive and emotional differences between cancer survivors and controls.

The differential effect of child age on the illness intrusiveness--parent distress relationship in juvenile rheumatic disease.

OBJECTIVE: Examine age-related patterns of association between parent-reported illness intrusiveness and parent distress in parents of youth with juvenile rheumatic diseases (JRDs). STUDY DESIGN: Cross-sectional multiple regression analysis tested child age as a moderator in the illness intrusiveness-distress relationship. PARTICIPANTS: Fifty-two parents of children ages 9-17 diagnosed with JRD. MAIN OUTCOME MEASURES: The Illness Intrusiveness Scale--Parent Version and the Brief Symptom Inventory. RESULTS: Parent-reported illness intrusiveness demonstrated a significant main effect on distress for all parents in the sample. This was qualified by an Illness Intrusiveness x Child Age interaction. Illness intrusiveness was found to be significantly related to distress among parents of older youth, but was only marginally related to distress for parents of younger children. CONCLUSIONS: Results are consistent with family life cycle development models of adjustment to childhood chronic illness. The clinical implications of the findings are also 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.

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 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.