Perceptions of emotion expression and sibling-parent emotion communication in Latino and non-Latino white siblings of children with intellectual disabilities.

OBJECTIVE: Examine general emotion expression and sibling-parent emotion communication among Latino and non-Latino white (NLW) siblings of children with intellectual disabilities (ID) and matched comparisons. METHODS: 200 siblings (ages 8-15 years) completed the newly developed Sibling-Parent Emotion Communication Scale and existing measures of general emotion expression and psychosocial functioning. Preliminary analyses evaluated scale psychometrics across ethnicity. RESULTS: Structure and internal consistency of the emotion expression and communication measures differed by respondent ethnicity. Latino siblings endorsed more general emotion expression problems and marginally lower sibling-parent emotion communication than NLW siblings. Siblings of children with ID reported marginally more general emotion expression problems than comparisons. Emotion expression problems and lower sibling-parent emotion communication predicted more internalizing and somatic symptoms and poorer personal adjustment, regardless of ID status. Siblings of children with ID endorsed poorer personal adjustment. CONCLUSION: Cultural differences in emotion expression and communication may increase Latino siblings' risk for emotional adjustment difficulties.

Cultural Influences on Sibling Relationships, Roles, and Self-Concept in the Context of Autism: Perspectives of Latino/a/x and non-Latino/a/x Siblings.

Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings' autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings' lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.

Psychological and school functioning of Latino siblings of children with intellectual disability.

BACKGROUND: Siblings of children with disabilities are at risk for internalizing psychological disorders; however, little is known about how culture influences this effect. This study examined the psychological and school functioning of Latino siblings of children with intellectual disability (ID). METHODS: Participants were 100 Latino (L) and nonLatino (NL) siblings (8-15 years) of children with ID (50 LID, 50 NLID) and 100 Latino and nonLatino control siblings (50 LC, 50 NLC). Siblings, parents, and teachers completed standard questionnaires regarding sibling emotional and behavioral functioning; sibling school report cards were obtained. Analyses of variance were conducted, controlling for parent age and family income; planned contrasts compared LID siblings to the other sibling groups. RESULTS: LID siblings reported significantly more internalizing (t(1) = 2.41, p < .05) and emotional t(1) = 3.06, p < .05) symptoms, poorer awareness of (t(1) = 2.26, p < .01) and greater reluctance to express (t(1) = 3.12, p < .01) their emotions, and more problems in personal adjustment and relationships with parents (t(1) = -2.50, p < .05). Significantly higher percentages of LID siblings scored in the at-risk or clinical range for internalizing and emotional symptoms, and were more likely to score above the clinical cut-off for separation anxiety disorder and to endorse global impairment. LID siblings experienced more school absences and lower academic performance. There were no group differences in externalizing behavior problems, somatic symptoms, or teacher-reported internalizing symptoms. CONCLUSIONS: Latino siblings of children with ID are at greater risk for internalizing psychological disorders and greater impairment in personal and school functioning. Results are discussed in terms of their sociocultural significance and clinical implications.

Recruiting Latino and non-Latino families in pediatric research: considerations from a study on childhood disability.

OBJECTIVE: To improve representation of minorities in research, we examined recruitment methods from our study of Latino and non-Latino families of children with Intellectual Disability (ID). METHOD: We compared recruitment strategies that yielded the enrollment target of 200 matched Latino and nonLatino families of children with ID and controls. Active recruitment strategies involved direct contact with potential participants; passive strategies included disseminating study information. RESULTS: Effective outreach focused on community agencies where children had ongoing involvement and utilizing bilingual/bicultural staff. Latino families were significantly more likely to be recruited by an active strategy than non-Latino families. Active and passive strategies were both effective with non-Latino ID families. Asking research participants to inform other families about the study and sharing consent to contact lists with other investigators was productive with control families. CONCLUSIONS: Bilingual staff and active recruitment through familiar community services were successful in recruiting Latino families for research.

Immigration and acculturation-related factors and asthma morbidity in Latino children.

OBJECTIVE: This article presents a summary of findings from asthma studies focusing on immigration and acculturation-related factors. A study examining associations between these processes, family cohesion and social support networks, and asthma morbidity in a sample of Dominican and Puerto Rican caregivers residing in the mainland U.S., is also described. METHODS: Latino children with asthma (n = 232), ages 7-16 (49% female) and their caregivers completed interview-based questionnaires on immigration and acculturation-related processes, family characteristics, and asthma morbidity. RESULTS: The frequency of ED use due to asthma may be higher for children of caregivers born in Puerto Rico. Acculturative stress levels were higher for Puerto Rican born caregivers residing in the mainland U.S. CONCLUSION: Asthma-related educational and intervention programs for Latino children and families should be tailored to consider the effects that the immigration and acculturation experience can have on asthma management. Specific family-based supports focused on decreasing stress related to the acculturation process, and increasing social and family support around the asthma treatment process may help to reduce asthma morbidity in Latino children.

Psychological treatments for pediatric functional gastrointestinal disorders.

Our objective was to systematically review and evaluate behavioral and psychological treatments applied to pediatric functional gastrointestinal disorders. Electronic searches were conducted in bibliographic databases including PubMed, PsychInfo, and Medline. Psychological and behavioral interventions were classified into the following 5 primary treatment modalities: psychoeducation, behavior therapy/contingency management, relaxation-based therapies (including biofeedback and hypnotherapy), and cognitive-behavioral therapy (including cognitive-behavioral family therapy). There was a wide variation in the quality and quantity of studies within each treatment category. Effective interventions generally involved multiple therapeutic components and included elements of both individual and family treatment. Psychological interventions that combine psychoeducation, relaxation-based therapies, and cognitive-behavioral therapy appear superior to standard care (reassurance or dietary manipulation) in the elimination of pain and reduction in functional disability. Although many psychological treatments demonstrated evidence of positive effects, few well-designed randomized controlled trials of psychological treatments for functional gastrointestinal disorders exist. More work is needed to determine the most potent, essential elements of psychological treatments alone or in combination with standard medical intervention, and to establish their applicability with diverse populations. Clinical and research implications are discussed.

Longitudinal non-adherence predicts treatment escalation in paediatric ulcerative colitis.

BACKGROUND: Medication non-adherence in paediatric ulcerative colitis (UC) has been associated with negative health outcomes including flares in disease activity. However, no studies to date have examined longitudinal adherence to maintenance medication in a prospective controlled trial. AIMS: To determine whether objectively measured adherence to standardised mesalazine (mesalamine) therapy over time was related to remission at 52 weeks and the need for treatment escalation in newly diagnosed paediatric patients with UC METHODS: PROTECT (NCT01536535) was a prospective, inception cohort, multi-site study of paediatric patients aged 4-17 years with newly diagnosed UC followed for 52 weeks. Patients received standardised mesalazine, with pre-established criteria for escalation to thiopurines or anti-TNFα inhibitors. Patients used pill bottles with electronic caps to monitor mesalazine adherence. We tested whether longitudinal adherence to mesalazine predicted steroid-free remission at week 52 (i.e. quiescent disease on mesalazine alone with no corticosteroids ≥4 weeks prior) and need for treatment escalation (i.e. introduction of immunomodulators, calcineurin-inhibitors or anti-TNFα inhibitors). RESULTS: Among 268 patients, average mesalazine adherence trajectories did not predict week 52 steroid-free remission. Declining adherence over time strongly predicted treatment escalation (ß = -.037, P = .001). By month 6, adherence rate ≤85.7% was associated with treatment escalation. CONCLUSIONS: Non-adherence may have affected therapeutic efficacy of standardised mesalazine, thereby contributing to need for treatment escalation. Routine adherence monitoring for at least 6 months following treatment initiation and addressing adherence difficulties early in the disease course are recommended.

Pain, disability, and symptoms among siblings of children with functional abdominal pain.

OBJECTIVE: To examine reports of pain, disability, and somatic and psychological symptoms among siblings of children with functional abdominal pain (FAP) and siblings of "healthy" comparison children. METHODS: This survey study explored two groups of participants (FAP and healthy) consisting of (1) children with FAP and their siblings and parents and (2) healthy comparison children and their siblings, and parents. Participants included 13 FAP families and 10 healthy comparison families. Siblings and children were between 8 and 14 years of age. Measures included the Behavioral Assessment System for Children, Abdominal Pain Index, Children's Somatization Inventory, Functional Disability Inventory, and Family Inventory of Life Events. Cross-sectional data were analyzed using correlations and analysis of variance techniques. RESULTS: Siblings of children with FAP reported significantly greater mean levels of emotional/ behavioral symptoms than siblings of healthy comparison children. No significant between-group differences were identified in FAP and healthy comparison parents' reports of siblings' pain or emotional/behavioral symptoms. There were significantly more persons with pain problems living in the homes of FAP families. Among FAP families, a greater number of parent-reported family stressful life events was significantly associated with sibling functional disability and somatic symptoms. CONCLUSION: This investigation suggests that siblings of children with FAP experience more emotional/behavioral symptoms than peers and that their symptoms are not readily identified by parents. These findings highlight the importance of considering the psychological functioning of "unaffected" siblings and family stressors when children present with recurrent pain complaints.

Latino sibling knowledge and adjustment to chronic disability.

Forty matched healthy Latino and non-Latino siblings (ages 8-14 years) of children with developmental and physical disabilities completed interviews and questionnaires assessing sibling knowledge of and adjustment to disability and sibling global psychological functioning. One-way analyses of variance revealed Latino siblings to have significantly less accurate information about the disability and more internalizing problems than non-Latino siblings. Sibling and parent wishes for the healthy sibling reflected cultural values. The results indicate that Latino siblings of children with chronic disabilities may be at risk for internalizing psychological problems. Future research regarding cultural factors affecting sibling adaptation to childhood disability is encouraged.

Cultural and child-related predictors of distress among Latina caregivers of children with intellectual disabilities.

The objective of this article is to examine associations among socioeconomic, cultural, and child factors and maternal distress among families of children with intellectual disabilities (ID). Latino and nonLatino White (NLW) mothers of children with and without ID (N  =  192) reported on familism, language acculturation, maternal distress, child adaptive functioning, and child behavior problems. Among mothers of children with ID, higher levels of child behavior problems mediated the association between Latina ethnicity and elevated maternal distress. Associations between child behavior problems and maternal distress in Latina mothers of children with ID were moderated by single-parent marital status, higher familism, and lower English usage. Thus, child and cultural factors contribute to elevated distress among Latina mothers of children with ID.

Perceptions of siblings' sexual activity predict sexual attitudes among at-risk adolescents.

OBJECTIVE: Most American youth have siblings. This study examined the influence of early adolescents' perceptions of their older sibling's sexual activity on their own sexual attitudes and behaviors. METHODS: Early adolescents (ages 12-14) at risk for emotional/behavioral problems reported on attitudes towards sex, sexual behaviors, and perception of older siblings' and peers' sexual activity and perceived parental approval toward sex. The sample was divided into 3 groups: teens who thought their older sibling was not having sex (N = 119), teens who believed their sibling was sexually active (N = 55), and teens without an older sibling (N = 170). RESULTS: Teens who thought their older sibling was not having sex scored higher in valuing abstinence and lower on perceptions of peer sex and maternal approval toward sex than teens who perceived their sibling to be having sex and teens without an older sibling. Regarding behaviors, teens who thought their older sibling was not having sex were less likely to endorse making out, touching genitals, oral sex, and vaginal sex compared with teens who thought their older sibling was having sex. CONCLUSIONS: Perceptions that older siblings abstain from sexual activity may be a protective factor for more conservative attitudes towards sex and decreased sexual activity among young at-risk teens. A single question about perceptions of siblings' sexual behaviors can be integrated into health care visits to introduce conversations about age-appropriate sexual decision-making.

Factors associated with recruitment and retention of diverse children with asthma.

This study examines factors associated with recruitment and retention of Latino, Dominican (DR) and mainland Puerto Rican (PR), and non-Latino white (NLW) families into a pediatric asthma study. Over eleven hundred (n=1185) families were screened, and 489 (n= 174 NLW, n= 160 DR, n= 155 PR) were enrolled. Rates of recruitment by source of recruitment and rates of retention differed by ethnic group. Families whose caregiver had never married had lower odds of completing the study. The findings highlight the need for further study to examine the effectiveness of specific recruitment and retention strategies with Latino and non-Latino white families.

Depressive symptoms in youth with inflammatory bowel disease compared with a community sample.

BACKGROUND: Previous investigations have produced mixed findings on whether youth with inflammatory bowel disease (IBD) experience elevated rates of depressive symptoms. Our first aim was to compare self-report of depressive symptoms by youth with IBD with a community sample. The second aim was to examine the relationship between symptoms of depression and measures of disease activity. METHODS: Item-level responses on the Children's Depression Inventory among a sample of 78 youth diagnosed with IBD were compared with responses from a community sample using 1-sample t-tests. Particular attention was given to items assessing somatic symptoms of depression given the potential overlap with IBD disease symptoms. The relationship between depressive symptoms and IBD disease activity was evaluated using Spearman's rank correlation coefficients and linear regression. RESULTS: Youth with IBD reported lower levels of depressive symptoms compared with the community sample on the Children's Depression Inventory Total Score, and similar or lower levels of difficulty on items assessing somatic symptoms. Most of the sample had inactive or mild disease activity at the time of participation, with 14% experiencing moderate/severe disease activity. Higher ratings of disease activity were related to greater depressive symptoms. Responses on somatic items from the Children's Depression Inventory were not differentially related to disease activity. CONCLUSIONS: As a group, pediatric patients with IBD did not experience the clinical levels of depressive symptoms or elevations in depressive symptoms when compared with a community sample. Somatic symptoms of depression do not differentiate youth with IBD experiencing elevations in disease activity from youth experiencing nonsomatic symptoms of depression.

Stability of Emotional and Behavioral Functioning in Youth with Inflammatory Bowel Disease.

This study prospectively examined stability of psychological and behavioral functioning in two matched cohorts of youth with inflammatory bowel disease (IBD): (1) newly-diagnosed and (2) previously-diagnosed patients. Youth and their parents completed measures of emotional and behavioral functioning at Time 1 and 6-months later. Mean-level analyses indicated that scores at Time 1 and Time 2 were within the nonclinical range. A significant decrease occurred in Internalizing symptoms for previously-diagnosed patients. Both groups demonstrated high levels of profile stability, with no significant differences across groups. Results suggest that emotional and behavioral functioning is generally stable without targeted intervention.

Rates and predictors of oral medication adherence in pediatric patients with IBD.

BACKGROUND: Symptoms of inflammatory bowel disease (IBD) include bloody diarrhea, fatigue, abdominal pain, and weight loss. Long-term management of remission for most patients requires adherence to taking 1 or more oral medications daily, in the absence of symptoms. We investigated whether disease characteristics and behavioral characteristics predict adherence to prescribed medical regimens. METHODS: : Patients aged 8 to 17.5 years, newly diagnosed with IBD, and a matched cohort previously diagnosed were studied over a 6-month period. Adherence was assessed using medication electronic monitoring devices (Medication Event Monitoring Systems); participants and parents completed questionnaires regarding emotional and behavioral functioning, and biological parameters were monitored. RESULTS: : Adherence was monitored for 45 newly and 34 previously diagnosed patients. In total, 16,478 patient-days (including 12,066 discrete days) were electronically monitored. Overall, 70.6% of 5-aminosalicylic acid and 65.4% of 6-mercaptopurine doses were taken. Only 25% and 15% of older adolescents took at least 80% of their 5-aminosalicylic acid and 6-mercaptopurine, respectively, compared with about 83% and 64% of 8-year-olds to 11-year-olds. Only age and behavioral issues were statistically linked to rates of adherence. CONCLUSIONS: Adherence to commonly prescribed oral medications for IBD is challenging for patients. Screening for emotional and behavioral problems, especially among older adolescents, would be important in identifying patients at risk of poor adherence, who might benefit from interventions. Biological solutions, although critical, when applied without attention to behavioral issues, are not likely to provide the level of therapeutic benefit that can be provided in a combined biobehavioral approach.

6-Thioguanine levels in pediatric IBD patients: adherence is more important than dose.

BACKGROUND: Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remission in children with both Crohn's disease and ulcerative colitis. Therapeutic efficacy is associated with higher red blood cell levels of the thiopurine metabolite 6-thioguanine (6-TGN). Studies in both children and adults have inexplicably failed to demonstrate a significant correlation between prescribed dose and level of 6-TGN. We aimed to quantify the relationship between 6-TGN levels and adherence. METHODS: We used electronic monitoring devices to assess adherence in children and adolescents with inflammatory bowel diseases who were prescribed 6-MP. RESULTS: During 3230 days of monitoring in 19 subjects, adherence to 6-MP was 74.2%. Due to the generally low adherence to the prescribed dose of 6-MP, the 6-TGN level was not correlated with the prescribed dose. The 6-TGN level was significantly correlated with the adherence-adjusted dose (R(2) = 0.395). It was also significantly correlated to adherence alone (R(2) = 0.478). Adherence to 5-aminosalicylic acid and 6-MP were significantly positively correlated (r(s)(9) = 0.82, P = 0.00), and a significant relationship was found between 5-aminosalicylic acid adherence and 6-TGN levels independent of 6-MP adherence. Furthermore, low adherence to 6-MP was associated with increased likelihood of escalation of medical therapy. CONCLUSIONS: Red blood cell 6-TGN levels are strongly correlated with the dose, when the dose is actually taken. Lack of efficacy of thiopurines may often be the result of poor adherence. Novel ways of assessing and improving adherence are necessary. Future trials should assess adherence in study participants. Intake of 5-aminosalicylic acid positively influences 6-TGN levels.

Patterns of medical and developmental comorbidities among children presenting with feeding problems: a latent class analysis.

OBJECTIVE: Children with feeding problems often have multiple co-occurring medical and developmental conditions; however, it is unknown whether patterns of comorbidity exist and whether they relate to important feeding-related health outcomes. The main objective of this study was to examine (1) the relationship between the number of medical and developmental comorbidities and important feeding-related health outcomes; (2) how various comorbidities interact and form empirically derived patterns; and (3) how empirically derived patterns of comorbidity relate to weight status, nutritional variety, and child and parent mealtime behavior problems. METHODS: The medical records of 286 children (mean age = 35.56 months) seen at an outpatient feeding disorders clinic were reviewed. Child weight status, nutritional variety, and child and parent mealtime behavior problems were assessed using standardized measures. The lifetime occurrence of medical and developmental conditions was reliably coded. Empirically derived patterns of comorbidity were generated via latent class analyses. RESULTS: Latent class analyses generated 3 comorbidity patterns: "Behavioral" (58% of cases), "Developmentally Delayed" (37%), and "Autism Spectrum Disorder" (ASD, 5%). The Autism Spectrum Disorder group was found to have less nutritional variety compared to the Behavioral and Developmentally Delayed groups. No differences were found between groups in terms of percent ideal body weight, or severity of child or parent mealtime behavior problems. CONCLUSION: Multiple co-occurring conditions of children with feeding problems were empirically reduced to 3 patterns of comorbidities. Comorbidity patterns were largely unrelated to weight status and child or parent mealtime behavior problems. This suggests that medical and developmental conditions confer general, rather than specific, risk for feeding problems in children.

Summer camps for children with burn injuries: a literature review.

The first summer camps for children with burn injuries started over 25 years ago, and as of 2008, there were 60 camps worldwide. This review examines the literature on summer pediatric burn camps. The authors describe common characteristics of burn camp structure, activities, and staffing and then examine the scientific evidence regarding the effect of burn camp programs on campers and camp staff volunteers. A search of Pubmed and Psychinfo databases from 1970 to 2008 for articles related to pediatric burn summer camps identified 17 articles, of which 13 fit the inclusion criteria. Existing literature consists primarily of qualitative studies, suggesting that burn camp can decrease camper isolation, improve self-esteem, and promote coping and social skills. Studies examining volunteer staff at burn camp have consistently found that there are both personal and professional benefits. Quantitative studies of self-esteem have yielded equivocal results. No studies have examined safety or the effect of burn camp on medical or rehabilitation outcomes. For the past 25 years, pediatric summer camps for children with burn injuries have played an important rehabilitation role and provided a strong community that benefits both campers and staff. Future research using more rigorous research methods and examining a broader range of outcomes (eg, safety and medical/rehabilitation outcomes) is recommended.