Dana M. Bakula

Objective: Feeding-tube weaning is conducted in both inpatient and outpatient settings, with significant logistical, financial, and structural barriers to both approaches. We sought to assess whether remote patient monitoring (RPM), using a mobile application, which would overcome many of these barriers, could be effective in helping patients tube wean. Methods: We prospectively enrolled patients with a feeding tube, aged 0–3 years. Enrolled families entered data daily into the remote application. Data were monitored by a nurse and reviewed weekly by a multidisciplinary team. A standard hunger provocation protocol was used, paired with medical, behavioral, oral motor, and nutrition interventions, as needed. We conducted a retrospective chart review to identify a comparison cohort. The chart review was collected first, then compared to the prospective, non-randomized trial of RPM tube weaning. Results: The chart review identified 141 children seen with a feeding tube from January 2023–June 2023. Of those, 17 children attempted a tube wean. The post-intervention group consisted of 38 children prospectively enrolled from the same clinic between November 2023–2024. In the pre-intervention group, 41% of the children (7/17) were successful in achieving all calories by mouth and 90% of children (34/38) in the post-intervention group were successful in tube weaning. Conclusions: RPM is a feasible and incredibly promising model for feeding-tube weaning in pediatric patients with a wide range of medical comorbidities, including patients with multiple comorbidities. RPM allowed for high-quality medical monitoring and for a dynamic intervention in response to patient data transferred to the medical team in real time.

Objectives: This scoping review investigates the character strengths of caregivers of children with pediatric feeding disorder (PFD), which impacts 1 in 37 children under 5 years of age. Caregivers of children with PFD are at risk for poor mental health outcomes, but there is limited research on the unique strengths that caregivers develop or leverage to help navigate the stress of caring for a child with PFD. Methods: The scoping review followed a standard framework and PRISMA-ScR guidelines to analyze studies focusing on caregivers of children with PFD or feeding-related issues. Definitions of strengths were defined by the 24 character strengths framework, outlined in the Values in Action Inventory of Strengths (VIA-IS), which highlights positive traits of humans. A comprehensive search of four databases identified 1,174 articles, which were screened based on inclusion criteria, resulting in 11 studies. Results: No studies directly investigated the strengths of caregivers as their primary outcome; however, multiple strengths were identified by coding strengths consistent with the VIA-IS across findings of the 11 included articles. Identified strengths highlighted caregiver resilience, with hope being the most frequent strength across studies. Conclusions: Strengths can be protective factors of caregiver mental health. However, there is limited literature on the strengths in caregivers of children with PFD, and how they develop over time. A small number of studies have identified the presence of multiple strengths among caregivers of children with PFD, but more research is needed to understand how we can leverage strengths to improve caregiver and child resiliency.

Background: Evidence-based tube feeding (TF) weaning involves reducing the volume of tube feeds to induce hunger, with interdisciplinary monitoring to allow for proactive medical, nutritional, and behavioral intervention as needed. This can be done outpatient; however, the current standard of care requires a high degree of medical monitoring and care coordination, which can be challenging to implement. The CHAMP App is a mobile app designed for remote patient monitoring of children born with congenital heart conditions who are at high risk for medical morbidity and mortality. The CHAMP App remote patient monitoring program would be ideally suited to improve medical monitoring and care coordination. Objective: This study aims to determine the feasibility of adapting the CHAMP App for children ready to wean from TF. Methods: We used the Non-adoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework as a formative tool and conducted a case study beta test. Results: The level of complexity for the digital innovation’s adaptation supported a high likelihood of success for the TF population. Most issues were simple, such as expanding the types of data that could be entered into the app, and some were more complicated, for instance, training all relevant staff to use and maintain the technology. The case study beta test was conducted with “Greyson”, a 10-month old child weaning from TF (name changed for confidentiality). Once a week, the team reviewed the parent-entered data and communicated with Greyson’s parents, recommending a 25% reduction in tube feeding each week. With the CHAMP App facilitating 2-way communication between the family and the team, Greyson successfully transitioned from receiving 30% of his feeds orally and 70% via tube feeding to 100% oral feedings over the course of 1 month in a home setting. Conclusions: The CHAMP App is likely to be incredibly valuable in TF weaning. The NASSS framework helped identify key considerations for adapting the CHAMP App for TF weaning at a Midwestern children’s hospital. Interviews with the health care team highlighted issues like data entry expansion and staff training. The framework confirmed TF weaning as a suitable application with no major barriers. The CHAMP App successfully supported a test patient, Greyson, in weaning from his feeding tube. It may improve access, communication efficiency, and satisfaction among families and health care teams while reducing costs and enhancing safety monitoring. The app could also make TF weaning more accessible to families with lower health literacy.

Objective: Pediatric feeding disorder (PFD) is a common condition for young children and can cause stress among parents. However, there are no parent psychosocial interventions that have been tested for efficacy in this population. Acceptance and commitment therapy (ACT) holds great promise for addressing parent stress among parents of children with PFD. In the present case report, we describe the application of ACT with a parent of a child with PFD, with a focus on parent and child outcomes and parent-reported implementation barriers and facilitators. Method: The mother of a young child with PFD completed six sessions of ACT focused on the stress she was experiencing related to her child’s feeding issues. Treatment was offered in the context of her child’s PFD treatment setting, and sessions were held over telehealth. Results: This mother’s stress improved from high to average over the course of treatment, using the Parental Stress Scale. The majority of her improvements in stress were following the first two sessions. She also reported qualitative benefits related to her parenting, her child’s feeding, and her general well-being. She reported several facilitators of treatment, including the flexibility offered throughout treatment the use of telehealth, and acknowledgment of her experiences. She reported barriers including mental health stigma, time constraints, and childcare. Conclusions: Brief treatment of parental stress, offered in a pediatric treatment setting is feasible to implement and may have clinical utility in supporting families of children with PFD or other medical conditions.

Objective: The objective of this topical review is to provide a rationale for the development of standards of care to address the mental health needs of caregivers of youth with chronic and acute conditions. Method: In this topical review, we describe the relationship between pediatric medical conditions and caregiver mental health, the state of available screening and intervention options, standards of care in medicine, existing caregiver mental health standards in pediatric subspecialty populations, and exemplar caregiver mental health programs that were developed in response to standards. Finally, we will describe our rationale for this standard of care, provide a call to action, and describe anticipated challenges in developing and implementing such standards. The content of this topical review was guided by expert knowledge, literature review, and communication with members of the American Psychological Association Division 54 through listserv communication. This review did not involve human subjects research and thus did not require Institutional Review Board approval, informed consent, or assent. Results: Standards of Care to address caregiver mental health in pediatrics is one approach to reduce gaps between caregivers’ needs and access to treatment. Standards that address caregiver mental health exist for a subset of pediatric medical subspecialty populations but are nonexistent across most pediatric populations. Conclusions: Multidisciplinary collaboration, with broad stakeholder input, could result in the writing of Standards of Care to lead to program development that addresses mental health for caregivers of children with a range of chronic and acute conditions. Implications for Impact Statement: This topical review calls attention to the gap between what is known about the mental healthcare needs of caregivers of children with chronic and acute conditions and the implementation of assessments and interventions to address these needs. The development of standards of care is one way to bridge this gap and could lead to the development of universally implemented caregiver mental health supports in pediatric healthcare settings.

The purpose of this systematic review and meta-analysis was to examine the effectiveness of psychological interventions at improving physical or mental health outcomes for youth living in rural communities who have, or are at-risk for, any chronic medical condition in comparison to control interventions conducted in rural communities. Following prospective registration (OSF.IO/7TDQJ), 7 databases were searched through July 1, 2023. Studies were included if they were a randomized control trial of a psychological intervention conducted with youth living in a rural area who had, or were at-risk for, a chronic medical condition. Risk of bias was assessed with the Cochrane risk of bias version 2 tool. A qualitative synthesis and meta-analysis were conducted. 15 studies met inclusion criteria. Obesity studies (n = 13) primarily focused on body mass index metrics, with limited significant findings across studies. Asthma treatment interventions (n = 2) showed no impact on hospitalizations. 3 studies evaluated mental health outcomes with no significant group differences observed. We meta-analytically analyzed 9 studies that evaluated body mass index z-scores and identified an overall null effect (Hedge’s g = 0.01, 95% CI [−0.07, 0.09], p = .85). Most included studies focused on pediatric obesity, and there was a limited range of health outcomes reported. Compared to controls, minimal significant improvements in health outcomes were identified for psychological interventions for youth living in rural communities. Future efforts may benefit from situating this work more systematically within a health disparities framework with a focus on understanding mechanisms of disparities and translating this work into interventions and policy changes.

Parents of children with pediatric feeding disorder (PFD) often experience high stress and may be at advanced risk for mental health conditions. We conducted a retrospective chart review of 413 parents who completed intake surveys at an interdisciplinary feeding clinic to determine the prevalence and types of mental health conditions among parents; 41.8% of parents reported a mental health diagnosis among the mother and/or father. Of the parents with mental health conditions, the most prevalent conditions reported were anxiety (71.1% for mothers, 50% for fathers) and mood disorders (62.7% for mothers, 40.9% for fathers). For mothers, 21.1% indicated their mental health disorder had a postpartum onset. Parents of children with birth complications were more likely to have a mental health condition (50.9%) than parents of children without a birth complication (38.7%), and parents reporting mental health conditions had children with significantly more co‐occurring medical conditions. Since parent stress and mental health can influence parent‐child interactions during mealtime, this study suggests the importance of addressing both parent mental health factors and child factors when treating children for PFD. Future studies are needed to develop novel interventions that support the specific mental health needs of parents of children with PFD.

The stressors experienced by parents of children admitted for inpatient rehabilitation likely place parents at high risk for poor psychosocial adjustment; however, no research to date has described parent adjustment during the acute phase of a child's inpatient rehabilitation hospitalization. The present study evaluates parent adjustment processes through the lens of the transactional stress and coping model by assessing a specific cognitive process (i.e., illness uncertainty) and coping methods (i.e., self-care), which may influence parent adjustment during the inpatient rehabilitation. Forty-two parents (47.6% White, 86% female) of children newly admitted to a pediatric inpatient rehabilitation hospital were recruited. Parents completed self-report measures of demographics, illness uncertainty, self-care, and depressive, anxious, and posttraumatic stress symptoms. Sixty-six percent of parents reported clinically significant symptoms in at least one domain of distress. Illness uncertainty accounted for 22.2%-42.4% of the variance in parent distress symptoms, after controlling for parent and child age, parent trauma history, and income. Self-care accounted for 35.1%-51.9% of the variance in parent distress symptoms, when accounting for parent and child age, parent trauma history, and income. More than half of parents endorsed clinical elevations in anxiety, depression, and/or posttraumatic stress. Illness uncertainty and self-care are likely very important clinical topics to discuss with parents. Future research should seek to not only assess how parent distress changes across time, but also how other cognitive processes, as well as environmental and family factors influence the parent adjustment process. (PsycInfo Database Record (c) 2023 APA, all rights reserved).