Screening for caregiver psychosocial risk in children with medical complexity: a cross-sectional study

Verma, Ritu; Mehdian, Yasna; Sheth, Neel; Netten, Kathy; Vinette, Jean; Edwards, Ashley; Polyviou, Joanna; Orkin, Julia; Amin, Reshma

doi:10.1136/bmjpo-2020-000671

Cited by 16 publications

(28 citation statements)

References 56 publications

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“…A tracheostomy tube for a child is not only associated with medical morbidity but also has important psychosocial effects on children and their families, including negative impacts on quality of life, sleep, relationships, social life, and employment. 4,5 As a result, decannulation of the tracheostomy tube is often a shared goal for patients, family caregivers, and their multidisciplinary care teams.…”

Section: Introductionmentioning

confidence: 99%

Decannulation following tracheostomy in children: A systematic review of decannulation protocols

Verma

Mocanu

Shi

et al. 2021

Pediatric Pulmonology

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Objective: To provide a systematic review of the existing pediatric decannulation protocols, including the role of polysomnography, and their clinical outcomes.Methods: Five online databases were searched from database inception to May 29, 2020. Study inclusion was limited to publications that evaluated tracheostomy decannulation in children 18 years of age and younger. Data extracted included patient demographics and primary indication for tracheostomy. Methods used to assess readiness for decannulation were noted including the use of bronchoscopy, tracheostomy tube modifications, and gas exchange measurements. After decannulation, details regarding mode of ventilation, location, and length of observation period, and clinical outcomes were also collected. Descriptive statistical analyses were performed.Results: A total of 24 studies including 1395 children were reviewed.Tracheostomy indications included upper airway obstruction at a well-defined anatomic site (35%), upper airway obstruction not at a well-defined site (12%) and need for long-term ventilation and pulmonary care (53%). Bronchoscopy was routinely used in 23 of 24 (96%) protocols. Tracheostomy tube modifications in the protocols included capping (n = 20, 83%), downsizing (n = 14, 58%), and fenestrations (n = 2, 8%). Measurements of gas exchange included polysomnography (n = 13/18, 72%), oximetry (n = 10/18, 56%), blood gases (n = 3,17%), and capnography (n = 3, 17%). After decannulation, children in 92% of protocols were transitioned to room air. Observation period of 48 h or less was used in 76% of children.Conclusions: There exists large variability in pediatric decannulation protocols.Polysomnography plays an integral role in assessing most children for tracheostomy removal. Evidence-based guidelines to standardize pediatric tracheostomy care remain an urgent priority.

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Section: Introductionmentioning

confidence: 99%

Decannulation following tracheostomy in children: A systematic review of decannulation protocols

Verma

Mocanu

Shi

et al. 2021

Pediatric Pulmonology

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“…A one-sample t-test comparing PAT2.0 scores in our sample ( M = 1.177, SD = 0.771) with previous studies revealed that our sample had significantly higher levels of psychosocial risk compared to specific clinical pediatric samples, such as pediatric cystic fibrosis ( M = 1.00, SD = 0.77, N = 374) (Filigno et al, 2019 ) or pediatric cancer ( M = 1.021, SD = 0.700, N = 396) (Kazak et al, 2020 ). However, the total risk score in our sample was relatively similar to that of children with medical complexities (CMC) ( M = 1.170, SD = 0.740, N = 136) (Verma et al, 2020 ).…”

Section: Resultsmentioning

confidence: 54%

Families following pediatric traumatic medical events: identifying psychosocial risk profiles using latent profile analysis

Sadeh

Dekel

Brezner

et al. 2022

European Journal of Psychotraumatology

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Background: Post-traumatic stress symptoms (PTSS) are often experienced by children and family members after pediatric traumatic medical events (PTMEs). Assessing families’ psychosocial risk factors is a crucial part of trauma-informed practice as it helps identify risk for PTSS in the aftermath of PTME. Objectives: Using the Psychosocial Assessment Tool 2.0 (PAT2.0), this study describes the psychosocial risk of families following PTMEs in two ways: 1. Describing the psychosocial risk defined by the PAT2.0 based on three-tiered risk levels; 2. Using latent profile analysis (LPA); identifying psychosocial risk profiles and examining how child- and injury-related factors can affect profile membership. Methods: Caregivers of 374 children following PTMEs admitted to a pediatric rehabilitation department in Israel completed the PAT2.0. Total PAT2.0 score and the seven PAT2.0 subscales (family structure/resources, social support, child problems, sibling problems, family problems, caregiver stress reactions, and family beliefs) were included in the first analysis. Mean PAT2.0 scores of three risk categories (universal, targeted, clinical) were calculated; LPA, which allows for cross-sectional latent variable mixture models to identify heterogeneity within a population, and multinomial logistic regressions using six out of the seven PAT2.0 subscales, were used to determine distinct profile differences and predictors of profile membership. Results: The three-tiered risk levels revealed were relatively high, as compared to levels in families of children with other clinical diagnoses. LPA yielded a three-profile solution: low family risk (63.53%); high caregiver stress, above-average levels of family risk (22.5%); and sibling problems, above-average levels of family risk (13.94%). Ethnicity and type of injury predicted group membership. Conclusion: Families of children following PTMEs are at increased psychosocial risk. A clinically useful approach to identifying and preventing PTSS may be to evaluate specific domain patterns rather than just the total PAT2.0 risk level alone, based on the PAT2.0 subscales.

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“…PAT scores of our cohort were seemingly lower than another study of parents of children with serious chronic illnesses, which showed their scores were among the highest of all previously studied pediatric populations, with 55% showing "Targeted" or "Clinical" risk. 33 Parental anxiety, but not depression, was also significantly higher when their child was intubated. Notably, parent emotional stress may be a sign that provider moral distress is also present (and vice versa), given that they correlate and all parties may recognize that the limitations of modern medicine to cure and of acute-illness-focused PICU care to address chronic needs.…”

Section: Discussionmentioning

confidence: 95%

Distress and the Long-Stay Pediatric Intensive Care Unit Admission: A Longitudinal Study of Parents and the Medical Team

Salant

Gangopadhyay

Jia

et al. 2021

J Pediatr Intensive Care

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Prolonged critical illness in children has emotional consequences for both parents and providers. In this observational cohort study, we longitudinally surveyed anxiety and depression in parents and moral distress in pediatric intensive care unit (PICU) providers (attendings, fellows, and bedside registered nurses) and explored their trajectories and relationships. Anxiety/depression and provider moral distress were measured using the Hospital Anxiety and Depression Scale and the Moral Distress Thermometer, respectively. The relationships of parental and provider distress were evaluated using Spearman's correlations, and their trajectories and potentially associated variables were explored using quadratic random slope and intercept models. Predetermined associated factors included demographic and clinical factors, including parent psychosocial risk and intubation status. We found parental anxiety and depression decreased over their child's admission, and parental psychosocial risk was significantly associated with anxiety (coefficient = 4.43, p < 0.001). Clinicians in different roles had different mean levels and trajectories of moral distress, with fellows reporting greater distress early in admissions and nurses later in admissions. Parental anxiety/depression and provider distress were significantly, though moderately, correlated. We conclude that anxiety and depression in parents of children with prolonged PICU admissions and the moral distress of their clinicians correlate and vary over time and by provider role.

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Screening for caregiver psychosocial risk in children with medical complexity: a cross-sectional study

Cited by 16 publications

References 56 publications

Decannulation following tracheostomy in children: A systematic review of decannulation protocols

Decannulation following tracheostomy in children: A systematic review of decannulation protocols

Families following pediatric traumatic medical events: identifying psychosocial risk profiles using latent profile analysis

Distress and the Long-Stay Pediatric Intensive Care Unit Admission: A Longitudinal Study of Parents and the Medical Team

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