Monica J. Mitchell

Family Functioning in the Context of Pediatric Chronic Conditions

Objective: The aims were to describe and compare generic family functioning in children with five different chronic conditions and healthy comparisons, and to examine the relations between family functioning and sociodemographic variables. Methods: A secondary data analysis from six independent studies including 301 children (cystic fibrosis: n = 59; obesity: n = 28; sickle cell disease: n = 44; inflammatory bowel disease: n = 43; epilepsy: n = 70; healthy comparison group: n = 57) was conducted. In each study, parents completed the Family Assessment Device. Results: Across all five chronic conditions, between 13% and 36% of families endorsed levels of functioning in the “unhealthy” range, with the greatest proportions in the following domains: communication, roles, and affective involvement. No significant group (i.e., between all six groups, namely five chronic conditions as well as healthy comparisons) differences were observed on Family Assessment Device scales (model F [35, 1335] = 0.81, p = .79). Older child age, fewer children living in the home, and lower household income were significantly related to poorer family functioning in the areas of communication, roles, affective involvement, and general functioning. Conclusions: Families of children with and without chronic conditions do not differ significantly from each other on generic family functioning. However, risk factors for poor family functioning include older child age, less children in the home, and lower household income. These risk factors combined with data suggesting that a subset of families exhibit “unhealthy functioning” warrants the need for close monitoring of how families function in the context of a pediatric condition.

Family functioning in young children with cystic fibrosis: observations of interactions at mealtime.

ABSTRACT. This study examined family functioning at mealtime, a context relevant to the management of cystic fibrosis (CF). Thirty-three families of children with CF and a control sample of 33 families of children without a chronic illness were assessed. Family functioning was rated during a videotaped dinner using the McMaster Mealtime Interaction Coding System (MICS), and mealtime behavioral problems were assessed using the Behavioral Pediatrics Feeding Assessment Scale (BPFAS). Ratings for families of children with CF were lower than for control families on overall functioning and five of six MICS dimensions (Communication, Interpersonal Involvement, Behavior Control, Affect Management, Roles). In families of children with CF, better family functioning was related to less frequently occurring mealtime behavioral problems (BPFAS); however, family functioning was not related to the childs weight status or the childs caloric intake. Data support that nutritional intervention may be maximized if dietary adherence is promoted in the context of positive parent-child and family interactions.

Perceived Barriers to Clinic Appointments for Adolescents with Sickle Cell Disease

Purpose The purpose of this study was to examine perceived barriers to clinic attendance and strategies to overcome these barriers for adolescents with sickle cell disease. Materials and Methods This was a 2-phased study, which used focus groups (n=13) and individual semistructured interviews (n=32) with adolescent patients (aged 13 to 21 y) from 3 pediatric sickle cell clinics in the Midwest. Results Adolescents identified competing activities, health status, patient-provider relationships, adverse clinic experiences, and forgetting as barriers to clinic attendance. Calendars/reminders and parent reminders were the most commonly reported strategies to facilitate clinic attendance. Adolescents also reported the need for flexible scheduling and improved patient-provider communication. Discussion Adolescents with sickle cell disease and their families may benefit from ongoing education about the importance of attending routine clinic visits. Adherence to clinic appointments for adolescents may be enhanced by developing interventions to decrease forgetting (eg, phone call reminders or text messaging) and increase patient satisfaction with clinic visits. Scheduling appointments to accommodate busy schedules/scheduling conflicts (eg, late clinic hours), providing teen-friendly clinic environments, and using technology may also facilitate attendance.

Barriers to Treatment Adherence for Pediatric Patients With Sickle Cell Disease and Their Families

This study systematically identified adherence barriers and strategies in 31 adolescents with sickle cell disease (SCD) and 71 caregivers. Qualitative data indicated that forgetting was the primary barrier and caregiver reminders were the primary strategies identified by both caregivers and adolescents. However, adolescents reported significantly more barriers for pain management (p < .01) than their caregivers. Caregivers and adolescents seem to experience similar as well as a few unique barriers and strategies across multiple components of the SCD treatment regimen. Multidisciplinary treatment teams have the opportunity to facilitate dialogue with patients and their families about adherence barriers and strategies.

A Randomized Pilot Study of Behavioral Treatment to Increase Calorie Intake in Toddlers With Cystic Fibrosis

This pilot study examined a behavioral treatment to increase calorie intake in toddlers with cystic fibrosis. Eight toddlers were randomly assigned to behavioral plus nutrition (BEH) or nutrition intervention (NTR) conditions. Calorie intake and weight were measured at pre- and posttreatment. The BEH group showed a trend for changes in calorie intake pre- to posttreatment (p = .07; 40% increase). Results for the BEH and NTR groups did not differ significantly. Most participants achieved weight gains consistent with normal growth. Seventy-five percent had not shown this pattern during the year prior to intervention. These results support the feasibility and potential for behavioral interventions in this age group.

Longitudinal Assessment of Pain, Coping, and Daily Functioning in Children with Sickle Cell Disease Receiving Pain Management Skills Training

Objective. To conduct intensive pain management skills training (IST) in children with sickle cell disease (SCD) and their parents and to comprehensively evaluate pain, coping, and daily functioning in children pre, immediately post, and 3 months following treatment. Methods. Three children who received IST in nonpharmacological and pharmacological pain management strategies completed a Coping Strategies Questionnaire (CSQ) at pre, post, and follow-up assessments, and daily pain and activity diaries for 18 weeks, spanning from 1 week pretreatment to 11 weeks posttreatment. Results. From pre- to posttreatment, 1 child receiving IST indicated increased report of active coping attempts and all 3 children indicated decreased report of negative thinking on the CSQ. Participants in IST used coping skills on 90% of days with pain and reported the skills to be moderately helpful on the daily diaries. For daily activities such as eating dinner, playing with friends, and hours slept, children participated similarly on days with pain and days without pain during the posttreatment period. Given the small number of participants in this study, individual cases are discussed to highlight similarities and differences in how participants responded to the treatment and during the 3-month follow-up period. Conclusions. In this pilot study, each participant showed improvement in coping and daily functioning after completing the IST program. Individual differences in response to treatment indicate the need for more targeted intervention programs that incorporate pharmacological and nonpharmacological components. The results of this study highlight both the promise and the complications of conducting comprehensive pain intervention and functional outcome studies in children with SCD.

Integrating Interactive Web-Based Technology to Assess Adherence and Clinical Outcomes in Pediatric Sickle Cell Disease

Research indicates that the quality of the adherence assessment is one of the best predictors for improving clinical outcomes. Newer technologies represent an opportunity for developing high quality standardized assessments to assess clinical outcomes such as patient experience of care but have not been tested systematically in pediatric sickle cell disease (SCD). The goal of the current study was to pilot an interactive web-based tool, the Take-Charge Program, to assess adherence to clinic visits and hydroxyurea (HU), barriers to adherence, solutions to overcome these barriers, and clinical outcomes in 43 patients with SCD age 6–21 years. Results indicate that the web-based tool was successfully integrated into the clinical setting while maintaining high patient satisfaction (>90%). The tool provided data consistent with the medical record, staff report, and/or clinical lab data. Participants reported that forgetting and transportation were major barriers for adherence to both clinic attendance and HU. A greater number of self-reported barriers (P < .01) and older age (P < .05) were associated with poorer clinic attendance and HU adherence. In summary, the tool represents an innovative approach to integrate newer technology to assess adherence and clinical outcomes for pediatric patients with SCD.

Disease Management, Coping, and Functional Disability in Pediatric Sickle Cell Disease

BACKGROUND Youth with sickle cell disease (SCD) experience chronic symptoms that significantly interfere with physical, academic, and social-emotional functioning. Thus, to effectively manage SCD, youth and caregivers must work collaboratively to ensure optimal functioning. The goal of the current study was to examine the level of involvement in disease management tasks for youth with SCD and their caregivers. The study also examined the relationship between involvement in disease management tasks, daily functioning, and coping skills. The study utilized collaborative care and disease management theoretical frameworks. METHODS Youth and caregivers participated in the study during an annual research and education day event. Forty-seven patients with SCD aged 6 to 18 years and their caregivers completed questionnaires examining level of involvement in disease management tasks, youth functional disability, and youth coping strategies. Caregivers also completed a demographic and medical history form. RESULTS Parents and youth agreed that parents were significantly more involved in disease management tasks than youth, although level of involvement varied by task. Decreased parent involvement was related to greater coping strategies used by patients, including massage, prayer, and positive thinking. Higher functional disability (lower functioning) was related to greater parent involvement in disease management tasks, suggesting that greater impairment may encourage increased parent involvement. CONCLUSIONS Health professionals working with families of youth with SCD should discuss with parents and youth how disease management tasks and roles will be shared and transferred during adolescence. Parents and youth may also benefit from a discussion of these issues within their own families.

Preschool Participation and BMI at Kindergarten Entry: The Case for Early Behavioral Intervention

Preschool years (ages 3–5) are a critical period in growth and development. Emerging studies suggest that preschool attendance may be linked to future weight, and perhaps obesity. This study examined relationships between public preschool attendance, demographic variables, and weight at kindergarten entry. Participants included 2,400 children entering kindergarten in 2006. Height and weight were used to calculate a childs BMI category based on CDC norms. At kindergarten entry, 17% of participants were overweight, and 18% were obese. Children attending a public preschool were at an increased risk for overweight (OR = 1.06) and obesity (OR = 1.34) at kindergarten entry, χ2(2) = 6.81, P = .03 relative to children who did not attend preschool. No significant trends relationships between demographics and weight status were found, but demographic variables are summarized descriptively. Policy and clinical implications are provided.

Growth status in children and adolescents with sickle cell disease.

Objectives: To assess the BMI status of children and adolescents with sickle cell disease (SCD) and determine if zBMI status during adolescence is predicted by gender, childhood zBMI status, disease genotype, and healthcare utilization (emergency department visits or hospitalizations). Study Design: Medical chart reviews were conducted on 133 patients followed through a regional Comprehensive Sickle Cell Center to obtain anthropometric measures and healthcare utilization data. Gender-specific BMI z-scores were calculated based on Centers for Disease Control (CDC) norms using Epi Info NutStat Software and SPSS generated syntax. Data were summarized categorically across two time periods for each participant: childhood (age 6–12 years) and adolescence (age 13–18 years). Results: Males were three times more likely to be underweight in adolescence compared to CDC norms, whereas females were three times more likely to be obese in adolescence. In addition, regression analyses indicated that BMI in adolescence was predicted by gender, average weight in childhood, and the average number of emergency department visits. Conclusions: Children with SCD generally exhibit normal growth during childhood and adolescence, although 5–10% are at risk for poor growth or obesity. Prevention and intervention efforts should consider gender, average weight in childhood, and healthcare utilization factors.