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1.
Hosp Pediatr ; 2024 Jul 29.
Article in English | MEDLINE | ID: mdl-39069815

ABSTRACT

BACKGROUND AND OBJECTIVES: Hospitalized families who use languages other than English (LOE) for care encounter unique communication challenges, as do children with medical complexity (CMC). We sought to better understand communication challenges and opportunities to improve care of families who use LOE from the perspectives of hospital staff and Spanish-speaking parents of CMC. METHODS: This qualitative project involved secondary analysis of transcripts from a study on family safety reporting at 2 quaternary care children's hospitals and additional primary data collection (interviews) of staff and parents. Bilingual researchers conducted audio-recorded, semistructured interviews with staff and Spanish-speaking parents of CMC during/after hospitalization. We professionally transcribed and translated interviews and developed, iteratively refined, and validated a codebook. Three independent researchers coded interviews using qualitative descriptive methodology and identified emerging themes through thematic analysis. RESULTS: We coded 49 interviews (13 parents, 11 physicians, 13 nurses, 6 allied health professionals, 6 leaders). Five themes emerged: (1) assumptions and bias regarding specific groups who use LOE for care, (2) importance of trust and relationships, (3) importance of language-concordant care, (4) workarounds to address communication challenges, and (5) the "double-edged" sword of technology. Participant-suggested strategies to improve communication included increasing interpreter access for parents and staff, optimizing technology use, and minimizing bias and assumptions through training. CONCLUSIONS: Parents of CMC and staff identified challenges and opportunities related to communicating with hospitalized families who use LOE for care. Solutions to improve communication and safety for these families should be attuned to needs of all parties involved.

2.
J Pediatr Rehabil Med ; 16(4): 649-655, 2023.
Article in English | MEDLINE | ID: mdl-38143398

ABSTRACT

PURPOSE: The purpose of the study was to determine if the use of continuous temperature monitoring smart socks is feasible in adolescents with spina bifida (SB) by obtaining user feedback on comfort. METHODS: Participants were provided temperature monitoring socks and a 4 G hub. Follow-up phone calls were performed to answer questions or discuss barriers. Sock temperatures were monitored throughout four weeks. Following sock wear, participants were asked to complete a satisfaction survey. RESULTS: Seventeen of the 33 participants enrolled (eight males, nine females) with a mean age of 14.8 years completed the study. Average sock wear was 8.0 hours per day for four weeks. The mean temperature was 83.4°F with a mean temperature differential between feet of -0.74°F (left-right). The duration of sock wear varied from 14.6 to 595.9 hours over the four-week period. Lastly, eleven participants (84.6%) reported that the socks were comfortable and very easy to put on. CONCLUSION: Continuous temperature monitoring smart socks are an option for monitoring risk for developing pressure injuries in adolescents with SB. Future directions would include increasing sample size, obtaining normative data for temperature ranges in this population, and correlating to clinical outcomes.


Subject(s)
Foot , Spinal Dysraphism , Male , Female , Humans , Young Adult , Adolescent , Temperature , Feasibility Studies , Surveys and Questionnaires , Spinal Dysraphism/complications
3.
Pediatrics ; 149(6)2022 06 01.
Article in English | MEDLINE | ID: mdl-35615941

ABSTRACT

BACKGROUND AND OBJECTIVES: Despite compelling evidence that patients and families report valid and unique safety information, particularly for children with medical complexity (CMC), hospitals typically do not proactively solicit patient or family concerns about patient safety. We sought to understand parent, staff, and hospital leader perspectives about family safety reporting in CMC to inform future interventions. METHODS: This qualitative study was conducted at 2 tertiary care children's hospitals with dedicated inpatient complex care services. A research team conducted approximately 60-minute semistructured, individual interviews with English and Spanish-speaking parents of CMC, physicians, nurses, and hospital leaders. Audio-recorded interviews were translated, transcribed, and verified. Two researchers coded data inductively and deductively developed and iteratively refined the codebook with validation by a third researcher. Thematic analysis allowed for identification of emerging themes. RESULTS: We interviewed 80 participants (34 parents, 19 nurses and allied health professionals, 11 physicians, and 16 hospital leaders). Four themes related to family safety reporting were identified: (1) unclear, nontransparent, and variable existing processes, (2) a continuum of staff and leadership buy-in, (3) a family decision-making calculus about whether to report, and (4) misaligned staff and parent priorities and expectations. We also identified potential strategies for engaging families and staff in family reporting. CONCLUSIONS: Although parents were deemed experts about their children, buy-in about the value of family safety reporting among staff and leaders varied, staff and parent priorities and expectations were misaligned, and family decision-making around reporting was complex. Strategies to address these areas can inform design of family safety reporting interventions attuned to all stakeholder groups.


Subject(s)
Parents , Physicians , Child , Hospitalization , Hospitals , Humans , Qualitative Research
4.
Child Obes ; 17(4): 281-290, 2021 06.
Article in English | MEDLINE | ID: mdl-33826861

ABSTRACT

Purpose: This study examines how baseline demographics, psychosocial characteristics, and intervention delivery predict engagement among adolescents with overweight and obesity seeking treatment. Methods: Data originates from a multisite randomized control trial evaluating the efficacy of an app-based weight loss intervention, compared with standard in-clinic model in adolescents with overweight and obesity. Participants were randomized to one of the three arms: (1) AppCoach, (2) AppAlone, or (3) Control. Demographic, executive functioning (EF), and depression questionnaires were completed at baseline. Percent engagement was compared within and between groups defined by demographics and depressive symptoms. Quantile regression was used to evaluate the association between age and EF on percent engagement. Results: Baseline demographics were not associated with engagement within or between groups. Neither baseline self-reported depressive symptoms (p = 0.244) nor deficits in EF (p = 0.34) were predictors of engagement. Univariate analysis found that the control arm had the highest engagement (83%) compared with AppCoach (63.5%) and AppAlone (22.5%, p = 0.02). Hispanic ethnicity was predictive of higher engagement in the control arm (p = 0.02). On multivariate quartile regression no other baseline characteristics were significant predictors of engagement. Conclusion: Baseline demographics and individual psychosocial characteristics were not related to engagement in this cohort. The intervention arm that required parental involvement resulted in the greatest engagement suggesting that family involvement may overshadow individual behavioral phenotype and thus promote better engagement. Further investigation is needed to understand how program delivery can be leveraged to optimize treatment engagement and outcomes in adolescence. Clinical Trial Registration number: NCT03500835.


Subject(s)
Pediatric Obesity , Weight Reduction Programs , Adolescent , Depression/epidemiology , Depression/therapy , Executive Function , Humans , Pediatric Obesity/epidemiology , Pediatric Obesity/therapy , Surveys and Questionnaires
5.
Contemp Clin Trials ; 95: 106082, 2020 08.
Article in English | MEDLINE | ID: mdl-32682994

ABSTRACT

BACKGROUND: Time limited eating (TLE) has been shown to be effective for weight loss and improvement of glycemic control in adults with obesity and type 2 diabetes (T2D), but has not been well studied in adolescents. TLE may be a more feasible, flexible and effective dietary intervention for adolescents because it removes the need for intensive counting of calories or macronutrients, and emphasizes eating during a specified time period. OBJECTIVES: The aim of this study is to assess the feasibility of a TLE approach in adolescents with obesity using a continuous glucose monitor (CGM) to promote adherence to the intervention. METHODS: We propose a prospective, randomized controlled trial, in 60 adolescents (ages 14-18) with obesity (BMI% ≥ 95th percentile). Youth will be randomized to one of three treatment groups for a 12-week intervention: Group 1) Low sugar and carbohydrate education (LSC, 5% of total daily calories from sugar (<35 g)/day; <90 g carbohydrate (CHO)/day) + blinded CGM (used to monitor adherence and glycemic outcomes without real time feedback), Group 2) LSC + TLE (16-h fast/8-h feed for 5 days per week) + blinded CGM, and Group 3) LSC + TLE+ real time feedback via CGM (to evaluate effect of providing CGM data on intervention efficacy). Outcomes will include change in total body fat (TBF) percentage measured on DEXA scan, BMI status and fasting blood glucose at 12 weeks compared to baseline. CONCLUSIONS: TLE is a potentially powerful lifestyle intervention that could be readily integrated into pediatric weight management programs to optimize their impact and accelerate healthy changes. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT03954223.


Subject(s)
Diabetes Mellitus, Type 2 , Pediatric Obesity , Adolescent , Adult , Blood Glucose , Blood Glucose Self-Monitoring , Child , Humans , Pediatric Obesity/therapy , Prospective Studies , Randomized Controlled Trials as Topic
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