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Vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula or atresia, renal anomalies, and limb abnormalities (VACTERL) association is a complex congenital condition characterized by the presence of malformations that affect various organ systems. Most children born with VACTERL association require surgery shortly after birth, often undergoing multiple procedures during infancy, which can lead to a wide range of physical challenges. The unique combination of malformations in these children in addition to having complex care needs that need to be met can result in physical and social difficulties in their daily lives, affecting both their own and their caregivers' quality of life. In some cases, children with complex medical needs are placed in foster care. When children with complex health needs enter the foster care system, there is a risk of overwhelming the caretaker, leading to their needs continuing to be unmet. Pediatricians have a role not only in helping support families but also in knowing what resources are available to meet these needs, which can be dependent on what their communities offer. Pediatricians require current training to navigate their state's foster care system. This training allows pediatricians to effectively collaborate with foster families while also assisting and coordinating complex care to support these families. We present a case of a child with complex health needs placed in the foster care system, facing multiple healthcare challenges, with care delayed due to difficulty attending appointments. Highlighted is the importance of delivering supportive, personalized, and multidisciplinary care to families with children who have complex health needs, including when caretakers are within the foster care system.

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Pediatric rehabilitation is fundamentally different from that of adults. Child physiology differs significantly from that of adults, necessitating specialized rehabilitation approaches. Unique injuries and varying metabolic rates underscore the need for tailored care, which changes over the years as the child grows and develops. Waiserberg's paper, "When Everyone is Responsible, No One Takes Responsibility": Exploring Pediatric Physiotherapy Services in Israel," sheds light on a critical issue. While senior practitioners oversee policy implementation and service delivery, practical physiotherapy treatment lacks continuous monitoring. This is a critical issue. Ideally, every child who requires long-term clinical therapeutic interventions to keep up with peers in mobility, communication and cognitive skills should be assessed by specialists several times throughout the school years, and their personalized rehabilitation plan discussed, reviewed, and adjusted according to their progress. The absence of a standardized protocol for overseeing and directing comprehensive rehabilitation plans leaves therapists feeling alone and adrift, whether working in schools or medical settings. Such an assessment would be an opportunity to create a registry, which is currently nonexistent. The collected data would be a priceless resource in policy decision-making and service planning.

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We examined healthcare costs at HonorHealth, a community-based academic health center comprised of 5 hospitals and numerous ambulatory care facilities. Patient encounters that resulted in admission in 2019 were included in the study. Mean costs in 2019 for high costs and high needs (HCHN) patients were compared with all remaining patients using a framework developed by the National Academy of Medicine. HCHN patients were older (71 vs 52 years), with a lower percentage of females (41.7% vs 59.8%), more frequently White (90.1% vs 87.5%), less frequently married (52.4% vs 54.5%), with a longer length of stay (6.5 vs 3.0 days) and higher mean charges ($134 743 vs $16 414). The mean cost per patient in the HCHN group decreased by age group ($192, 963, $165 200, $144 584, $134 795, and $108 356) for 0 to 18, 19 to 44, 45 to 64, 65 to 84, and 85+ years, respectively. HCHN patients were more publicly insured (49% vs 38%). Targeted interventions to treat HCHN may lead to lower healthcare costs and improved health outcomes within this system.

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Good communication is central to good healthcare. As a result of poor communication between parents and healthcare professionals (HCPs) in clinical settings, this study aimed to address this problem by developing a communication tool to empower parents and act as a prompt for HCPs to talk about the child's care and gather information at the point of admission to hospital about what is important to families, therefore supporting patient-centered communication. A design thinking process was used to develop a physical copy of Chloe's card and evaluate its use. Design thinking is a problem-solving approach, which uses an empathetic lens to integrate viewpoints of different stakeholders throughout the process of creating solutions. Design thinking involves five processes: (1) empathise-including a literature review and data synthesis, (2) define-by completing semi-structured interviews with parents about their experience of communication and HCPs perceptions of parent's experience of communication, (3) ideate-iterate the design of Chloe's card with parents and HCPs, (4) prototype-develop the design of Chloe's card, and (5) test-pilot test in clinical practice. Results from this initial study suggest that a small hand-held card, with emoticons and a place to write concerns, was acceptable to parents and feasible to use in clinical practice. Parents do not always feel heard by HCPs and a tool such as Chloe's card may help facilitate sharing of information about matters important to them and their child. However, some HCPs felt the need for a communication tool undermined their clinical skills. Feedback from HCP participants suggests that the idea of Chloe's card was acceptable and perceived as potentially being useful in clinical practice. Further work is required, as part of a larger study, to further refine this communication tool, identify those parents who would benefit most from Chloe's card, as well as to further refine the HCP process prior to implementing it into clinical settings. It was noted future iterations would benefit from a digital version linked with a child's electronic record, as well as multi-language versions and information for parents.

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Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. Objective: This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their "good parent" definitions. Methods: A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed- and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Results: Respondents' medical decisions are driven by goals of unselfishly doing what is best for my child (61%) and being my child's voice (18%). Almost half indicated that their personal "good parent" definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal "good parent" definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their "good parent" beliefs. Conclusions: The findings indicate that trusted provider-initiated conversations about "good parent" beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their "good parent" beliefs.

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OBJECTIVES: The Holmes County Amish have low vaccination rates, an increasingly diverse population, and have an increased incidence of certain inherited diseases. The objectives were to evaluate; the rate and influences of vaccine hesitancy compared to a decade ago, vaccination patterns between Amish affiliations, vaccine practices of Amish special needs children, and the Amish's acceptance of a COVID-19 vaccine. STUDY DESIGN: In April of 2020, a survey assessing vaccination patterns and beliefs were mailed to 1000 Amish families, including ultra-conservative Amish sects and special needs families. RESULTS: The response rate was 39%. Among 391 respondents, 59% did not vaccinate their children, compared to only 14% that refused all vaccinations reported by Wenger et al in the same community only a decade ago. The ultra-conservative Amish rejected vaccines more often. Amish special needs children were more likely to receive vaccines than healthy Amish children. 75% responded they would reject a COVID-19 vaccine. Fear of adverse effects was the most common reason to reject vaccines. Families that accepted vaccines were more likely to cite a healthcare worker as the primary influence to vaccinate. Wives were more likely to cite their spouse as the primary influence to vaccinate. Families that rejected vaccines were more likely to state their bishop was the most influential person on vaccination. CONCLUSION: The Holmes County Amish have decreasing vaccine acceptance. Efforts to improve vaccination will require a targeted focus on the primary influences and beliefs of sub-populations within the Amish. Physician advocacy, peer mentorship, father-directed education, and close partnership with Church leadership will be needed to limit vaccine-preventable disease. The Amish may be at risk for low uptake of a COVID-19 vaccine.

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BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be a good parent" comes into existence for parents, (2) How parents' definition of "being a good parent" may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. AIM: The purpose of this study was to explore these current gaps in the "good parent concept" knowledge base from the perspective of parents of children with chronic or complex illness. MATERIALS AND METHODS: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. RESULTS: The term "trying to be a good parent" resonated with 85% of the 67 responding parents. For the majority of parents, the concept of "being a good parent" started to exist in parental awareness before the child's birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child's prognosis and changing health as influential on their "trying to be a good parent" concept. Parental advocacy, child's age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of "being a good parent". CONCLUSIONS: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.

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Little is known about how parents' experiences of respite services or 'short breaks' for a child with complex medical needs relate to family functioning and the manner in which parents cope. The aim of this study was to examine the relationship between parents' satisfaction with short breaks, family functioning and parental coping and to determine whether these variables change over time. The sample included 32 families receiving short breaks. A repeated measures quantitative design was used, with data collected at baseline and 12 months. The main outcome variables were satisfaction with short breaks, family functioning and parental coping. At baseline, descriptive statistics showed positive levels of satisfaction with services and coping, while family functioning scores suggested more negative profiles. Also at baseline, significant negative correlations were identified between the age of the child receiving short breaks and certain approaches to parental coping. At Time 2 (n = 17, 73% of possible responses), satisfaction with services was significantly positively correlated with aspects of family functioning and coping. Using dependent t tests, no evidence was found of significant change overtime in satisfaction or family functioning for the sample who completed data collection at both time points. However, a significant decrease in use of certain coping approaches was found over time. While parents' satisfaction levels with short breaks were high across test occasions, there is need for service development aimed at providing interventions that are tailored to ameliorate tension within the family and promote active parental coping over time.

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