Children with medical complexity, pain and symptom management, palliative care
The hospital to home transition for children with medical complexity (CMC) poses many challenges, including suboptimal communication between the hospital and medical home. Our objective was to evaluate the implementation of a discharge videoconference incorporating the patient, caregiver, primary care provider (PCP), hospitalist physician, and case manager.We evaluated implementation of this pilot intervention at a freestanding tertiary care children's hospital using mixed methods. A discharge videoconference was conducted for hospitalized children (< 18 years old) meeting complex chronic disease (C-CD) criteria. We collected field notes and conducted surveys and semi-structured interviews. Outcomes included adoption, cost, acceptability, feasibility, and appropriateness. Adoption, cost, and acceptability were analyzed using descriptive statistics. Acceptability, feasibility, and appropriateness were summarized using thematic content analysis.Adoption: A total of 4 CMC (9% of the 44 eligible children) had discharge videoconferences conducted. Cost (in provider time): On average, videoconferences took 5 min to schedule and lasted 21.5 min. Acceptability: All hospitalists involved (n = 4) were very likely to participate again. Interviews with caregivers (n = 4) and PCPs (n = 5) demonstrated that for those participating, videoconferences were acceptable and appropriate due to benefits including development of a shared understanding, remote physical assessment by the PCP, transparency, and humanization of the care handoff, and increased PCP comfort with care of CMC. Feasibility: Barriers included internet connection quality and scheduling constraints.This novel, visual approach to discharge communication for CMC had low adoption, possibly related to recruitment strategy. The videoconference posed low time burdens, and participating physicians and caregivers found them acceptable due to a variety of benefits. We identified several feasibility barriers that could be targeted in future implementation efforts.
View details for DOI 10.1186/s40814-020-00572-7
View details for PubMedID 32099662
View details for PubMedCentralID PMC7027051
As food allergy increases, more research is devoted to its influence on patient and family mental health and quality of life (QoL). This article discusses the effects on parent and child QoL, as well as distress, while appraising the limitations of knowledge given the methods used. Topics include whether QoL and distress are affected compared with other illnesses, assessment of distress and QoL in parents compared with children, concerns about food allergy-related bullying, and the necessity for evidence-based interventions. Suggestions are offered for how to improve QoL and reduce distress on the way to better coping with food allergy.
View details for DOI 10.1016/j.psc.2014.11.004
View details for PubMedID 25725570
The social vulnerability that is associated with food allergy (FA) might predispose children with FA to bullying and harassment. This study sought to quantify the extent, methods, and correlates of bullying in a cohort of food-allergic children.Patient and parent (83.6% mothers) pairs were consecutively recruited during allergy clinic visits to independently answer questionnaires. Bullying due to FA or for any cause, quality of life (QoL), and distress in both the child and parent were evaluated via questionnaires.Of 251 families who completed the surveys, 45.4% of the children and 36.3% of their parents indicated that the child had been bullied or harassed for any reason, and 31.5% of the children and 24.7% of the parents reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates. Bullying was significantly associated with decreased QoL and increased distress in parents and children, independent of the reported severity of the allergy. A greater frequency of bullying was related to poorer QoL. Parents knew about the child-reported bullying in only 52.1% of the cases. Parental knowledge of bullying was associated with better QoL and less distress in the bullied children.Bullying is common in food-allergic children. It is associated with lower QoL and distress in children and their parents. Half of the bullying cases remain unknown to parents. When parents are aware of the bullying, the child's QoL is better. It is important to proactively identify and address cases in this population.
View details for DOI 10.1542/peds.2012-1180
View details for PubMedID 23266926
View details for PubMedCentralID PMC3529950
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