Literature Collection

OBJECTIVE: To explore quality of life outcomes for caregivers of children with childhood dementia including the positive and negative impact of caregiving. The secondary aim was to explore caregivers' perspectives on healthcare services for children with dementia. DESIGN: Cross-sectional, mixed-methods study with analyses of quantitative and qualitative data collected via online survey. SETTING: Australian tertiary referral children's hospitals, clinics and community advocacy groups. PATIENTS: 40 caregivers of children with dementia. INTERVENTIONS: The survey was developed by a multidisciplinary team of clinicians including paediatric neurologists and behavioural scientists with experience in caring for families with childhood dementias and mixed-methods research. MAIN OUTCOME MEASURES: Surveys assessed caregiver-reported health-related quality of life, psychological distress, the impacts of caregiving and perspectives on healthcare services and how they may be improved for children with dementia. RESULTS: Psychological distress was reported by 72.5%, caregiver stress by 67%, chronic pain or discomfort by 43% and for 87.5% their child's condition had a moderate or severe impact on their ability to do regular daily activities. Caregivers voiced a desire for more integrated care, increased general awareness and education around childhood dementia and a greater need for more trained support services. CONCLUSIONS: Caregivers of children with dementia experience high levels of psychological distress, physical and social consequences. This study highlights the need for integrated care and psychosocial support to efficiently connect children and families with appropriate healthcare services and resources.

BACKGROUND: Women and children experiencing domestic, family and sexual violence in Australia face barriers to accessing primary care. To overcome these barriers, a proactive and integrated primary care outreach service for women and their children was piloted on the Central Coast of New South Wales, Australia. This study explored the acceptability and feasibility of the service from the perspective of service providers and women using the service. METHODS: Eight service providers and six women who had used the service were interviewed. Different aspects of service feasibility were explored and the Levesque's Conceptual Framework of Access to Health was used to investigate the service's acceptability. RESULTS: Four overarching themes relating to the service's acceptability and feasibility were identified: (1) Delivering trauma-informed care; (2) Removing barriers to care; (3) Skilled providers working collaboratively; and (4) Sustainability and expansion of the service. CONCLUSIONS: The service used an intensive and flexible approach to address the complex needs of clients. Key features of the model that were valued by both clients and service providers included the ability to provide care in locations that were safe and convenient to clients, provision of trauma-informed care, advocacy activities, and multidisciplinary care. Communication among providers was seen as key to the model's success.

This paper explores an Australian place-based collaboration of ten agencies to reform the delivery of integrated health and social care services to children and families with complex health and social challenges. Data comprises interview transcripts of semi-structured individual interviews with 17 employees across the six most-engaged agencies in late 2022. Employing thematic analysis, we found that whilst there was agreement on the vision of creative, trust-based collaboration to drive, implement and scale up service delivery reform, points of tension highlighted complexities that acted contrary to this vision. These tensions suggest the need to clarify the governance role of the collaboration, attend to project maturation processes, revise the strategic direction as collaborations evolve, maintain communication and agency involvement, and continue to listen to consumer and clinician voices. We conclude that, in a complex service system environment, it is crucial to maintain and review a shared vision, clear strategies and a healthy collaborative environment. These conclusions may inform other interagency collaborations and policies with the goal of integrating health and social care.

Racial disparities in mental health care access and quality are associated with higher levels of unmet need for Black parents and families, a population disproportionately affected by the COVID-19 pandemic. Integrating services within early childhood education centers may increase mental health care access for Black families with young children. The current study examined the feasibility, acceptability, and perceived impact of an integrated program offering mental health care for parents, children, and dyads during the pandemic. Black parents (N = 61) completed measures of program satisfaction and perceived benefits of participation, and 47 parents also participated in focus groups further assessing perceptions of the program. Results demonstrated high levels of satisfaction and perceived benefit of the program for parents and children. Themes generated through analysis included: social support, creating a safe space, prioritizing self-care, and sharing parenting strategies. Parents' feedback provides preliminary feasibility and acceptability for the integrated mental health program.

The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.

INTRODUCTION: The spread of the SARS-CoV-2 virus, which caused Coronavirus Disease 2019 (COVID-19), led to a global pandemic and public health crisis, which affected the physical health and mental well-being of Americans in every part of the country. Although the effect of the pandemic was ubiquitous, it has been more extensively studied in urban areas, which leads to an underscoring of the burden of COVID-19 in rural US. Health disparities adversely affect children in rural communities, each of which is unique and requires interventions based on regional needs. Characterization of COVID-19 disease in the pediatric population in rural areas is important for the development of protocols to address future surges of COVID-19 cases by the local health systems. METHODS: This study is a retrospective, cross-sectional chart review of 86 children hospitalized with the diagnosis of COVID-19 at three different hospitals that are part of an integrated rural health system in North and South Dakota. The population demographics of the surveyed states included Caucasian (84.2% SD; 86.6% ND), Native American (8.6% SD; 4.9% ND), Black (2.6% SD; 3.6% ND), and Asian (1.8% SD; 1.7% ND). All the charts identified from the EMR by filtering for patients hospitalized between October 2020 and May 2021, with an age less than 18 years, and with the ICD-10 code for COVID-19 infection were reviewed. Patients with Multi-system Inflammatory Syndrome in Children were excluded. RESULTS: More than half of the patients identified as Caucasian (58%), (24%) as Native American, (12%) as Black/ African American, (5%) as Asian, and (1%) were unidentified. The median age was 12 years. Almost half of the patients, 42%, had a significant past medical history, defined as having one or more of the following diagnoses: asthma, diabetes mellitus, or immunodeficiency. The most common comorbidity was an elevated BMI>25 noted in 31 patients of which 11 (13%) were overweight and 20 (23%) were obese. 18 patients (22%) were admitted to the ICU with a median length of ICU-stay of 3.5 days. 34 patients (40%) required oxygen supplementation with a median length duration of 3-days. 8 patients (9%) required intubation. The median length of mechanical ventilation support was 3-days. There were no deaths. CONCLUSIONS: It was interesting to note that in this study, pediatric patients with SARS-CoV-2 infection requiring hospitalization were disproportionately represented by minority groups (Native Americans, Blacks, and Asians) when compared to the proportion in the population. The predominance of Caucasian patients however was reflective of the general population of the surveyed states. Almost half the patients had one or more of the following diagnoses: asthma, diabetes mellitus, or immunodeficiency, risk factors previously identified for COVID-19. A common comorbidity among the patients studied was increased BMI, which has been noted as a risk factor for SARS-CoV-2 infection in the literature. This demonstrates that there are multiple common risk factors in rural and urban populations despite environmental differences.

The purpose of this study was to compare the utilization of primary care services and presence of mental health disorder diagnoses among children in foster care to children on Medicaid not in foster care in a large health system. The data for this study were analyzed from a clinical database of a multipractice pediatric health system in Houston, Texas. The sample included more than 95 000 children covered by Medicaid who had at least one primary care visit during the 2-year study period. The results of the study demonstrated that children not in foster care had a greater number of primary care visits and the odds of having >3 visits were significantly lower for children in foster care with a mental health disorder diagnosis. Additionally, more than a quarter of children in foster care had a diagnosis of a mental health disorder, compared with 15% of children not in foster care.