Experiences in Coping with Stress-A Qualitative Study of Family Caregivers of Children with Medical Complexity.

Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving.

Methods: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children's hospital in Western Pennsylvania. Participants completed in-depth, semi-structured interviews focused on how CMC family caregivers approach and manage caregiving-related challenges and stress.

Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity.

Objective: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC).

Methods: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment).

Meaning-centered pain coping skills training for patients with metastatic cancer: Protocol for a randomized controlled efficacy trial.

Background: Many patients with advanced cancer describe pain as a debilitating symptom that greatly interferes with daily activities and enjoyment of life. Psychosocial interventions can improve cancer-related pain but rarely address spiritual concerns (e.g.

A National Profile of Families and Caregivers of Children With Disabilities and/or Medical Complexity.

Objective: Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level.

Methods: We performed a secondary analysis of the 2016-2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity.

Prevalence and Characteristics of Providers' Care Coordination Communication With Schools.

Objectives: Care coordination between schools and medical providers promotes child health, particularly for children with physical, emotional, and behavioral challenges. The purpose of this study was to assess caregivers' reports of provider-school communication for their children. Further, the study assessed if communication rates varied by child demographic or health conditions.

The Mental and Physical Health of Mothers of Children with Special Health Care Needs in the United States.

Objective: To determine the prevalence of poor mental and physical health among mothers of children with special health care needs (CSHCN) and to determine the association between maternal health and the child's number of special health care needs (SHCN) and severity of ability limitation.

Methods: We used the combined 2016-2018 National Survey of Children's Health Dataset of 102,341 children ages 0-17 including 23,280 CSHCN. We used regression models to examine the associations of a child's number of SHCN and ability limitations with maternal health.

A National Mental Health Profile of Parents of Children With Medical Complexity.

Objectives: The mental health of parents of children with medical complexity (CMC) is poorly understood, yet it drives child and family health outcomes. For parents of CMC, compared with parents of noncomplex children with special health care needs (CSHCN) and children without special health care needs (non-CSHCN), we examined self-reported mental health, knowledge of community sources for help, and emotional support.

Methods: Using parent-reported data from the combined 2016-2017 National Survey of Children's Health, we divided the population into 3 groups: households with CMC, noncomplex CSHCN, and non-CSHCN.

A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center.

Objective: Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center.

Methods: We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital.

Identifying Children With Medical Complexity From the National Survey of Children's Health Combined 2016-17 Data Set.

Objectives: To develop a method of identifying children with medical complexity (CMC) from the National Survey of Children's Health (NSCH) 2016-2017 combined data set, to compare this approach to existing CMC identification strategies, and to describe sociodemographic characteristics of our CMC sample.

Methods: Using survey items pertinent to the medical complexity domains in the style by Cohen et al (chronic health conditions, health service needs, health care use, and functional limitations), we created a schema to categorize children as CMC by applying a 95th percentile cutoff for survey item positivity. We applied existing CMC identification techniques to the NSCH.

Most Children With Medical Complexity Do Not Receive Care in Well-Functioning Health Care Systems.

Objectives: To describe the access of children with medical complexity (CMC) to well-functioning health care systems. To examine the relationships between medical complexity status and this outcome and its component indicators.

Patients And Methods: Secondary analysis of children in the National Survey of Children's Health combined 2016-2017 data set who received care in well-functioning health systems.

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination.

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 Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively.

Pediatric palliative care in the medical neighborhood for children with medical complexity.

Children with medical complexity (CMC) are a medically fragile pediatric population that experience severe chronic illnesses resulting in significant health care needs, functional limitations, and health care utilization, and are at the highest risk for morbidity and mortality among all children. Furthermore, families and parents of CMC experience significant caregiver hardships and diminished quality of life. The field of pediatric palliative care has grown in recent years, in part to address the physical and psychosocial issues inherent to the care of these chronically ill children.

Palliative care use amongst patients with bladder cancer.

Objectives: To describe the rate and determinants of palliative care use amongst Medicare beneficiaries with bladder cancer and encourage a national dialogue on improving coordinated urological, oncological, and palliative care in patients with genitourinary malignancies.

Patients And Methods: Using Surveillance, Epidemiology, and End Results-Medicare data, we identified patients diagnosed with muscle-invasive bladder cancer (MIBC) between 2008 and 2013. Our primary outcome was receipt of palliative care, defined as the presence of a claim submitted by a Hospice and Palliative Medicine subspecialist.

System-Level Factors Associated With Use of Outpatient Specialty Palliative Care Among Patients With Advanced Cancer.

Purpose: The proportion of patients with advanced cancer who receive outpatient specialty palliative care (OSPC) is as low as 2.0%. Improved understanding of the system-level factors influencing use of OSPC could inform adaptations to the delivery of palliative care to maximize access.