"Can you hear me OK?": Caregivers of Children With Medical Complexity and Their Perspectives of Virtual Care During COVID-19.

INTRODUCTION: The rapid and widespread shift to virtual care during COVID-19 created new opportunities and unique challenges for families of children with medical complexity (CMC). However, few studies have examined perceptions of virtual care during the pandemic in this population. METHOD: To address this gap, the current study used a qualitative approach and semistructured interviews via Zoom to explore parent perspectives of virtual care. Purposive sampling was used to recruit 30 parents residing with their CMC (aged 0-18 years) in British Columbia, Canada. RESULTS: The findings identified from the data included (1) advantages and opportunities, (2) concerns and challenges, and (3) parent choice and preference. DISCUSSION: Our findings indicate the need for healthcare professionals to receive training to use virtual care in their practice effectively. In addition, policies about standards for virtual care and ensuring families have access to the necessary technology will help reduce barriers and improve equity and inclusion for this population.

"We are exhausted, worn out, and broken": Understanding the impact of service satisfaction on caregiver well-being.

Few studies exist that have examined the impact of service-related factors and system-level disruptions (i.e., the pandemic) on families of autistic children in Canada using large sample sizes. To address this gap, the goal of this research was to examine the impact of satisfaction with autism services on caregiver stress, controlling for important demographic variables, such as family income, marital status, and child level of support needs. The impact of navigating and accessing services on parent well-being was also explored. A total of 1810 primary caregivers of autistic children or youth living in Ontario, Canada completed a survey with both closed- and open-ended questions in the summer of 2021. A hierarchical multiple regression was conducted to examine the impact of satisfaction with autism services on caregiver stress. Open-ended responses on the survey from a subset of the sample (n = 637) were coded using thematic analysis to understand the impact of navigating and accessing services on parent well-being. Satisfaction with services significantly predicted caregiver stress after controlling for marital support, family income, and child level of support needs. Qualitative analysis revealed impacts of navigating and accessing services in three areas: (1) Physical, (2) Emotional/Psychological, and (3) Financial Well-being. Understanding parent perceptions of satisfaction with services can shed light on strategies for improving services that support parent well-being.

"A very different place from when the pandemic started": Lessons learned for improving systems of care for families of children with medical complexity.

Coronavirus disease 2019 (COVID-19) created unprecedented challenges for everyone, but especially families of children with medical complexity (MC) who rely on a comprehensive range of health and social services in their daily lives. Yet despite this, there are limited studies exploring caregiver perspectives regarding access to health and social services during the pandemic. To address this gap, we aimed to explore how health and social services can better meet the needs of children with MC and their families. Sixteen parents residing with their children with MC (from birth to 18 years) in British Columbia, Canada participated in semi-structured interviews between July 2021 and April 2022. Findings revealed two different areas to improve services for families of children with MC, those relating to technology and family-centered care. Parents prioritized expanding the use of digital communication tools to support service navigation and scheduling. Virtual platforms were viewed as being valuable for building connections with other families and their community. In terms of family-centered care, parents emphasized the importance of policies recognizing the physical, emotional, and financial needs of the family. Findings have important implications for improving services to enhance the well-being and quality of life of children with MC and their families.

A preliminary exploration of different coping strategies used by Korean immigrant parents of autistic children in high versus low family quality of life ratings.

LAY ABSTRACT: The experiences of coping in parents of autistic children have been extensively studied in the literature. While this research has identified both effective and ineffective coping strategies used by caregivers, no studies to date have examined how coping strategies used by parents might be linked to family quality of life outcomes. Furthermore, few studies exist examining both coping strategies and family quality of life in culturally and linguistically diverse populations. Thus, this study aimed to address both limitations. A total of 12 Korean immigrant parents of autistic children, 6 representing the high family quality of life group and 6 representing the low family quality of life group, shared their experiences related to coping and managing stress. Responses fell under three broad categories (problem-focused, emotion-focused, and adjustment-focused) with differences observed when comparing the high versus low family quality of life groups. A better understanding of the link between coping strategies and family quality of life outcomes may help identify effective and culturally sensitive supports for caregivers and families to improve their quality of life and well-being.

A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families.

LAY ABSTRACT: Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children.

Cross-cultural perspectives on the meaning of family quality of life: Comparing Korean immigrant families and Canadian families of children with autism spectrum disorder.

LAY ABSTRACT: The purpose of this study was to compare Korean immigrant families and Canadian families of children with autism in their perceptions and definitions of family quality of life. Interviews were done with 13 Korean immigrant parents and 12 Canadian parents of children with autism living in BC, Canada. For Korean immigrant families, three themes were identified: family cohesiveness, value orientation, and acceptance from society. For Canadian families, themes comprising family interactions, support, emotional well-being, individual characteristics, and comparisons to other families were essential elements in defining their family quality of life. The findings emphasize how differences in culture may impact how we understand and assess family functioning and quality of life. If research informing the development of these tools lacks cross-cultural perspectives, service providers and professionals may fail to address these families' unique needs.

A Systematic Review of Risk and Protective Factors for Externalizing Problems in Children Exposed to Intimate Partner Violence.

Intimate partner violence (IPV) is a serious public health issue with innumerable costs to the victims, children, and families affected as well as society at large. The evidence is conclusive regarding a strong association between exposure to IPV and children's externalizing problems. Moving forward, the next step is to enhance our understanding of risk and protective factors associated with these outcomes in order to tailor treatments to meet the needs of both parents and children. The databases Medline, PubMed, and PsyINFO were searched combining variations of the key words such as parent*, child*, mother, partner abuse, domestic abuse, spousal abuse, interpersonal violence, domestic violence, or intimate partner violence. This search were combined with child externalizing behaviors specifically conduct*, oppositional defiant disorder, externaliz*, aggress*, hyperactivity, and ADHD. A total of 31 studies from all three databases were reviewed following application of inclusion and exclusion criteria. The main findings were that child age and gender, callous-unemotional traits, cognitive appraisals, maternal mental health, and quality of parenting emerged as key mediating and moderating factors of the relationship between IPV exposure and child externalizing problems. These findings suggest that interventions provided to families exposed to IPV need to target both maternal and child risk factors in order to successfully reduce child externalizing problems.

Notes from the Field: Meningococcal Disease in an International Traveler on Eculizumab Therapy - United States, 2015.

On June 2, 2015, CDC was notified that a male airline passenger, aged 41 years, with a fever of 105.4°F, headache, nausea, photophobia, diarrhea, and vomiting, which began approximately 3 hours after departure, was arriving to San Francisco, California, on a flight from Frankfurt, Germany. His symptoms reportedly started with neck stiffness 1 day earlier. Upon arrival, the patient was immediately transported to a local hospital, where he was in septic shock, which was followed by multisystem organ failure. Cerebrospinal fluid, obtained approximately 12 hours after initiation of treatment, was Gram stain- and culture-negative. Blood cultures, which were drawn before antibiotic treatment, were positive for Neisseria meningitides of indeterminate serogroup. A review of the patient's medical records revealed a history of paroxysmal nocturnal hemoglobinuria and current biweekly eculizumab (Soliris) therapy.