Community Resource Connection for Pediatric Caregivers with Unmet Social Needs: A Qualitative Study
Health Equity; pediatric caregivers; Qualitative Research; Social Determinants of Health; Unmet Social Needs
OBJECTIVE: Pediatric health systems are increasingly screening caregivers for unmet social needs. However, it remains unclear how best to connect families with unmet needs to available and appropriate community resources. We aimed to explore caregivers' perceived barriers to and facilitators of community resource connection. METHODS: We conducted semi-structured interviews with caregivers of pediatric patients admitted to one inpatient unit of an academic quaternary care children's hospital. All caregivers who screened positive for one or more unmet social needs on a tablet-based screener were invited to participate in an interview. Interviews were recorded, transcribed, and coded by two independent coders using content analysis, resolving discrepancies by consensus. Interviews continued until thematic saturation was achieved. RESULTS: We interviewed 28 of 31 eligible caregivers. Four primary themes emerged. First, caregivers of children with complex chronic conditions felt that competing priorities related to their children's medical care often made it more challenging to establish connection with resources. Second, caregivers cited burdensome application and enrollment processes as a barrier to resource connection. Third, caregivers expressed a preference for geographically tailored, web-based resources, rather than paper resources. Lastly, caregivers expressed a desire for ongoing longitudinal support in establishing and maintaining connections with community resources after their child's hospital discharge. CONCLUSION: Pediatric caregivers with unmet social needs reported competing priorities and burdensome application processes as barriers to resource connection. Electronic resources can help caregivers identify locally available services, but longitudinal supports may also be needed to ensure caregivers can establish and maintain linkages with these services.
Vasan A; Darko O; Fortin K; Scribano PV; Kenyon CC
Academic Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.acap.2021.09.010" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2021.09.010</a>
Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective
Pediatrics; palliative care; bereavement; end of life care; Health personnel
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. METHODS: Exploratory qualitative research using semi-structured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multi-disciplinary team thematically analyzed the data. RESULTS: Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout preloss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the preloss care they provide constituted optimal care. CONCLUSION: As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team.
Kochen EM; Teunissen SCCM; Boelen PA; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Academic Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.acap.2021.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2021.08.015</a>
Family Caregivers of Children with Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination
care coordination; caregiver emotional well-being; caregiver health-related quality of life; Children with medical complexity
OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). METHODS: From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n=136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the CDC HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination. RESULTS: In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93). CONCLUSIONS: CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.
Yu J A; Henderson C; Cook S; Ray K
Academic Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.acap.2020.06.014" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2020.06.014</a>
Core Curricular Priorities in the Care of Children With Medical Complexity: A North American Modified Delphi Study
children with medical complexity; complex care; curriculum development; pediatrics; postgraduate medical education; residency education
Background: Previous studies of pediatric residents have identified educational gaps in caring for children with medical complexity. Training opportunities in complex care vary across residency programs. Defining core curricular topics in complex care is a priority in medical education. Objective(s): To identify core topics to include in a standard complex care curriculum for pediatric residents. Method(s): An initial topic list was generated through literature review and proceedings of national meetings. Expert panelists were identified based on experience in complex care and residency education. A modified Delphi method was used to determine group consensus by asking participants to rate the importance of complex care curricular topics for pediatric residents. Consensus was defined as >70% of experts identifying a topic as essential. There was a predetermined maximum of 3 iterative, electronic survey rounds, with feedback provided to participants between each round. Result(s): Sixteen experts participated. Response rate was 100% for all rounds. Experts were from the United States (44%) and Canada (56%); most were affiliated with an academic medical center (96%) involved in both inpatient and outpatient care (69%). Eleven topics were identified as essential across 3 rounds: feeding difficulties, pain/irritability, transition, feeding tube management, difficult discussions, team management/care coordination, dysmotility, aspiration, safety/emergency planning, neuromuscular/skeletal issues, and advocacy. Essential topics were organized according to the International Classification of Functioning, Disability and Health. Conclusion(s): Eleven curricular priorities in complex care were identified across multiple domains of the International Classification of Functioning, Disability and Health framework, serving as a guide for standardized curriculum development for future pediatricians. Copyright © 2020 Academic Pediatric Association
Huth K; Newman L; Glader L
Academic Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.acap.2020.01.014" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2020.01.014</a>
Development and pilot testing of a coping kit for parents of hospitalized children
Objective Serious pediatric illness places great stress on families. Parents who learn coping skills may better manage these stressors. This study sought to develop and refine a stress coping intervention for parents of hospitalized children, assess the intervention acceptability among these parents, and gather preliminary data on stress, negative and positive affect, anxiety, depression, and self-efficacy. Methods We conducted an observational study in 2 phases, enrolling parents of children who were inpatients with serious illness, 10 in Phase 1 and 40 in Phase 2. All parents completed at baseline measures of stress and psychological well-being and were introduced to the Coping Kit for Parents. Follow-up interviews were conducted at one week (all parents) and one month (Phase 2 parents only) regarding the acceptability of the intervention. Results At baseline, parents reported that stressful situations were frequent (mean=30.6, SD=6.8) and difficult (mean=26.2, SD=7.1), and revealed elevated levels of negative affect (mean=27.3, SD=7.7), depression (mean=8.5, SD=3.7) and anxiety (mean=11.3, SD=3.1), and moderate levels of self-efficacy related to their child's illness (mean=3.3, SD=0.5). The majority of parents used the kit regularly and on a scale of 1 to 7 agreed that the kit was helpful (mean=6.0, SD=0.9), interesting (mean=5.7, SD=1.3), practical (mean=5.7, SD=1.4), enjoyable (mean=6.0, SD=1.3), and they would recommend it to other parents (mean=6.4, SD=0.9). Conclusions The Coping Kit for Parents is an acceptable stress management intervention that could be made available to parents of children with serious illness at pediatric hospitals with minimal staff training or time commitment.
Hill Douglas L; Carroll KW; Snyder KJG; Mascarenhas M; Erlichman J; Patterson CA; Barakat Lamia P; Feudtner C
Academic Pediatrics
2018
<a href="http://doi.org/10.1016/j.acap.2018.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2018.11.001</a>
Evaluating Curricular Modules in the Care of Children with Medical Complexity: A Mixed-Methods Randomized Controlled Trial
Huth K; Audcent T; Long-Gagne S; Sbrocchi AM; Weiser N; Miller D; Arje D; Major N; Issa K; Cohen E; Orkin J
Academic Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.acap.2018.04.075" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2018.04.075</a>
Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity
OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children. METHODS: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC. Interviewees included child and family advocates, health and social service providers, and research, health systems, and policy leaders. We performed thematic content analyses to identify emergent themes regarding population health for CMC. RESULTS: Overall, interviewees conveyed that defining and measuring population health for CMC is an achievable, worthwhile goal. Qualitative themes from interviews included: 1) CMC share unifying characteristics that could serve as the basis for population health outcomes; 2) optimal health for CMC is child specific and dynamic; 3) health of CMC is intertwined with health of families; 4) social determinants of health are especially important for CMC; and 5) measuring population health for CMC faces serious conceptual and logistical challenges. CONCLUSIONS: Experts have taken initial steps in defining the population health of CMC. Population health for CMC involves a dynamic concept of health that is attuned to individual, health-related goals for each child. We propose a framework that can guide the identification and development of population health metrics for CMC.
Barnert ES; Coller R J; Nelson BB; Thompson LR; Chan V; Padilla C; Klitzner TS; Szilagyi M; Chung P J
Academic Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.acap.2017.02.010" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2017.02.010</a>
Methods to Assess Adverse Childhood Experiences of Children and Families: Toward Approaches to Promote Child Well-being in Policy and Practice
Adverse Childhood Experiences; Child Health; Measurement; Resilience
BACKGROUND: Advances in human development sciences point to tremendous possibilities to promote healthy child development and well-being across life by proactively supporting safe, stable and nurturing family relationships (SSNRs), teaching resilience, and intervening early to promote healing the trauma and stress associated with disruptions in SSNRs. Assessing potential disruptions in SSNRs, such as adverse childhood experiences (ACEs), can contribute to assessing risk for trauma and chronic and toxic stress by asking about ACEs can help with efforts to prevent and attenuate negative impacts on child development and both child and family well-being. Many methods to assess ACEs exist but have not been compared. The National Survey of Children's Health (NSCH) now measures ACEs for children, but requires further assessment and validation. METHODS: We identified and compared methods to assess ACEs among children and families, evaluated the acceptability and validity of the new NSCH-ACEs measure, and identified implications for assessing ACEs in research and practice. RESULTS: Of 14 ACEs assessment methods identified, 5 have been used in clinical settings (vs public health assessment or research) and all but 1 require self or parent report (3 allow child report). Across methods, 6 to 20 constructs are assessed, 4 of which are common to all: parental incarceration, domestic violence, household mental illness/suicide, household alcohol or substance abuse. Common additional content includes assessing exposure to neighborhood violence, bullying, discrimination, or parental death. All methods use a numeric, cumulative risk scoring methodology. The NSCH-ACEs measure was acceptable to respondents as evidenced by few missing values and no reduction in response rate attributable to asking about children's ACEs. The 9 ACEs assessed in the NSCH co-occur, with most children with 1 ACE having additional ACEs. This measure showed efficiency and confirmatory factor analysis as well as latent class analysis supported a cumulative risk scoring method. Formative as well as reflective measurement models further support cumulative risk scoring and provide evidence of predictive validity of the NSCH-ACEs. Common effects of ACEs across household income groups confirm information distinct from economic status is provided and suggest use of population-wide versus high-risk approaches to assessing ACEs. CONCLUSIONS: Although important variations exist, available ACEs measurement methods are similar and show consistent associations with poorer health outcomes in absence of protective factors and resilience. All methods reviewed appear to coincide with broader goals to facilitate health education, promote health and, where needed, to mitigate the trauma, chronic stress, and behavioral and emotional sequelae that can arise with exposure to ACEs. Assessing ACEs appears acceptable to individuals and families when conducted in population-based and clinical research contexts. Although research to date and neurobiological findings compel early identification and health education about ACEs in clinical settings, further research to guide use in pediatric practice is required, especially as it relates to distinguishing ACEs assessment from identifying current family psychosocial risks and child abuse. The reflective as well as formative psychometric analyses conducted in this study confirm use of cumulative risk scoring for the NSCH-ACEs measure. Even if children have not been exposed to ACEs, assessing ACEs has value as an educational tool for engaging and educating families and children about the importance of SSNRs and how to recognize and manage stress and learn resilience.
Bethell CD; Carle A; Hudziak J; Gombojav N; Powers K; Wade R; Braveman P
Academic Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.acap.2017.04.161