Friends' Perspective: Young Adults' Reaction to Disclosure of Chronic Illness.

Chronic illness can negatively impact adolescents' and young adults' social support. Social support can buffer the negative impact of living with chronic illness. The purpose of this study was to test the acceptability of a hypothetical message to promote social support after a recent diagnosis of a chronic illness. Young adults (18-24; m = 21.30; N = 370), the majority of which were Caucasian, college-students, and female, were asked to read one of four vignettes and to imagine this situation happened while they were in high school. Each vignette contained a hypothetical message from a friend diagnosed with a chronic illness (cancer, traumatic brain injury, depression, or eating disorder). Participants answered forced-choice and free-response questions asking about the likelihood they would contact or visit the friend, and feelings about receiving the message. A general linear model was used to assess quantitative results, and qualitative responses were coded using the Delphi coding method. Participants responded positively, reporting a high likelihood to contact the friend, and feeling glad to receive the message regardless of vignette viewed; however, those who read the eating disorder vignette were significantly more likely to express discomfort. In qualitative responses, participants described positive emotions associated with the message and desire to support the friend. However, participants reported significantly greater discomfort with the eating disorder vignette. The results provide evidence for the potential of a short, standardized disclosure message to promote social support following chronic illness diagnosis with some additional considerations for those recently diagnosed with an eating disorder.

Pediatric GI Health Care Professionals' Perceptions of and Engagement With Psychosocial Providers in Pediatric IBD Care.

Multidisciplinary care is recommended for optimal pediatric inflammatory bowel disease (IBD) care, including psychosocial providers (eg, psychologists). However, health care professionals' (HCPs) perceptions of and engagement with psychosocial providers in pediatric IBD is lacking. Methods: Cross-sectional REDCap surveys were completed by HCPs (eg, gastroenterologists) across American ImproveCareNow (ICN) centers. Demographics and self-reported perceptions of and engagement with psychosocial providers were collected. Data were analyzed at participant and site levels through descriptives, frequencies, an independent t test, and exploratory analyses of variance. Results: A total of 101 participants from 52% of ICN sites participated. Participants were 88% gastrointestinal physicians, 49% identifying as female, 94% non-Hispanic, and 76% Caucasian. Of ICN sites, 75% and 94% of sites reported outpatient and inpatient psychosocial care, respectively. Participants referred for various clinical reasons to psychosocial providers (eg, illness adjustment). At the participant level, 92% of HCPs reported psychosocial care was very important and 64% reported their clinical thresholds shifted to engage psychosocial providers earlier in care. Barriers to psychosocial care included limited psychosocial providers (92%), psychosocial providers availability (87%), and IBD patients' lack of openness to psychosocial care (85%). One-way analyses of variance by HCP length of experiences were not statistically significant on perceived understanding of psychosocial providers or perceived changes in clinical threshold over time. Conclusion: HCPs overall reported positive perceptions of and frequent engagement with psychosocial providers in pediatric IBD. Limited psychosocial providers and other notable barriers are discussed. Future work should continue interprofessional education of HCPs and trainees and efforts to improve access to psychosocial care in pediatric IBD.

Unexpected Poor Growth in Pediatric Patients on Food-based Enteral Therapy: Case Series and Suggested Practice Changes.

INTRODUCTION: Enteral feeding pumps at times may deliver different volumes than are prescribed, which can negatively impact growth, nutrition, and well-being. This study sought to assess whether challenges with pump accuracy for patients on food-based formulas contributed to challenges with weight gain. METHODS: Chart review identified complex feeding patients receiving food-based enteral nutrition via feeding pump with unexpected weight loss. Relevant data, such as enteral formula type, and anthropometric information were extracted. RESULTS: Five complex pediatric feeding patients were identified and 2 of these cases were summarized as representative examples, showing weight loss in children following the introduction of enteral food-based formulas because of feeding pump inaccuracy. CONCLUSIONS: Complex pediatric feeding patients may display unexpected and poor weight gain and growth while receiving food-based enteral feeding interventions because of pump errors. It is vital for providers to be aware of these challenges for timely intervention.

Parent-reported toilet training practices and the role of pediatric primary care providers.

BACKGROUND: Toilet training is a universal developmental milestone and a stressful period for families with few empirically based guidelines. PURPOSE: This study identified currently used methods of toilet training and sources used for parental guidance. METHODOLOGICAL ORIENTATION: A descriptive, qualitative design was used. SAMPLE: Participants included 479 parents of children aged 2-6 years. CONCLUSIONS: Parents described diverse toilet training strategies, most of which were behavioral and inconsistent with recommendations of the American Academy of Pediatrics. Most children were toilet trained between 24 and 36 months within 5 weeks. Forty-one percent of parents relied on the Internet for toilet training information, and fewer than half reported involvement of their child's primary care provider. IMPLICATIONS FOR PRACTICE: Parents in the community would likely benefit from additional education and anticipatory guidance from primary care providers about normative toilet training. Further work is needed to understand the effectiveness of different methods of training and improve adherence to AAP recommendations.

Friendship changes following a friend's school absence after serious illness or injury.

Social support is vital in helping adolescents cope following a serious illness or injury, though it is not known how their healthy peers react to potential changes in the nature of their friendships during this time. In this questionnaire-based study, emerging adults in the community indicated whether they had an experience with a friend's serious illness during adolescence and responded to structured and open-ended questions about their experience. Participants reported diminished contact with friends following diagnosis, such as decreased frequency of visits and communication. Participants most commonly cited logistical issues, such as transportation, and their friend's emotional and/or physical functioning as barriers to staying connected. Friends reported a mixture of positive and negative experiences associated with a friend's illness. The communication barriers highlighted provide a potential focus for intervention. Results suggest positive communication promotion with healthy friends may be an important path to enhance social support after a serious illness diagnosis or injury.

Parents Reliably Identify Pain Dismissal by Pediatric Providers.

OBJECTIVES: Approximately 40% of children and adolescents with chronic pain report at least 1 dismissal experience, citing medical providers and parents as the primary and most distressing dismissers. Previous research indicates sex differences in pain dismissal experience and observer pain perception. This study examined parental reactions to dismissive provider-child scenarios and the influence of provider and patient sex on perceptions. METHODS: Community parents (N=326) completed an online survey. Parents were randomized to listen to 1 of 8 vignettes of a provider-child chronic pain scenario. Vignettes varied by type of scenario (appropriate vs. dismissive)×provider sex×patient sex. RESULTS: Overall, parents rated the dismissive scenario more negatively. There was a significant interaction between provider sex and scenario regarding likelihood to bring their own child to this provider and a significant 3-way interaction regarding provider belief of the pain complaint. When asked how they would feel if this was their own child, parents who heard the dismissive scenario reported more negative reactions. When asked what they would say to the provider, parents in the dismissive condition were more likely to defend their child and request a second opinion. DISCUSSION: Parents consistently identified the dismissive language in a child and provider scenario. Female providers and sex-matched dyads seem to be more polarizing in terms of likelihood to bring their child to the provider and belief of pain, respectively. Providers within these groups may need to be especially cautious with their language when responding to pediatric chronic pain complaints.

Development and Initial Validation of the Communication About Medication by Providers-Parent Scale (CAMP-P).

This study evaluated the psychometric properties of the Communication about Medication by Providers-Parent Scale (CAMP-P), a 24-item measure of communication relevant to medication adherence between parents and medical providers. Parents of youth (ages 2-7 years) who had received a prescription within the last 12 months completed online surveys regarding demographic and appointment variables, and child's recent prescription medications, and they completed the newly developed CAMP-P. Exploratory factor analysis of CAMP-P identified 20 items about provider communication corresponding to 3 distinct scales: medication administration strategies, encouraging communication, and addressing barriers to medication taking. Factor scales were related to appointment variables, such as length of time spent discussing medications. The CAMP-P demonstrated good internal consistency and convergent and divergent validity. The CAMP-P is a novel, validated measure of parent perceptions of medication communication and can be utilized to evaluate parent-provider communication on pediatric medication adherence in clinical and research settings.