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A significant portion of autistic adults experience mental health challenges. Currently, the literature is incomplete when it comes to understanding the needs and preferences of autistic adults who receive therapy. This study elicited the perspectives of autistic adults, focusing on the facilitators, barriers and ways to enhance psychotherapy based on receiving this care for mental health problems. Using the qualitative, exploratory approach of the Enhanced Critical Incident Technique, eight autistic adults took part in interviews. A total of 147 critical incidents were extracted from participant interviews and categories salient to therapeutic practice. The study identified key factors influencing therapy, such as trust and respect, practical approaches, client factors, structure of sessions, knowledge about autism, support for individualized needs, access to mental health services, and involvement of family/advocate. These factors were categorized into eight main areas relevant to therapeutic practice. Findings from this research reveal that psychotherapy with autistic adults is analogous to performing this work with non-autistic adults, in the sense that this work too entails elements of individually tailored treatment and the reliance on common therapeutic factors. There are also differences in this work that necessitate providers having foundational knowledge about autism. Learning directly from autistic adults' insights may help to improve upon the delivery of mental health care for autistic adults.

Background Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children’s hospital in eastern Canada. Results Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children’s end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child’s physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child’s needs and their family’s desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.

The global pandemic and subsequent denials, delays, and disruptions in essential daily activities created significant challenges for children with neurodevelopmental disorders (NDDs) and their parents. Public health restrictions during the COVID-19 pandemic limited access to supports and services required by children with NDDs to maintain their health and well-being. This study sought to understand the impacts of these public health measures and restrictions on mental health from the perspective of parents with children with NDDs to inform pathways for public health policies responsive to the needs of this population. Interpretive descriptive design was used to guide data collection and data analysis. Forty caregivers were interviewed about their experience with pandemic restrictions. Generic policy measures contributed to many gaps in families' social support systems and contributed to mental health challenges for children and their parents. Four themes emerged: 1) lack of social networks and activities, 2) lack of access to health and social supports, 3) tension in the family unit, and 4) impact on mental health for children and their parents. Emergency preparedness planning requires a disability inclusive approach allocating resources for family supports in the home and community. Families identified supports to minimize further pandemic disruptions and enhance recovery.

There is evidence that childhood adversity is correlated with poor health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate this relationship. However, among children on the autism spectrum, these relationships are understudied, and little is known about the characteristics and role of adversity and resilience in their in their lives. This study interprets these phenomena as experienced by autistic young adults. Initially, we conducted community engagement with five members of the autism community who advised on the research question, research design, and analysis. Subsequently, four autistic young adults, three women and one non-binary, aged 19-27, were recruited to participate in semi-structured interviews via phone, video conference, and online chat. Credibility checking interviews followed data analysis. Through interpretative phenomenological analysis we identified themes related to the negative effects of adversity, including social disconnection, mental and emotional well-being, sense of self, and development into young adulthood. Resilience developed in places of refuge and identity and was evident in their transitions into young adulthood. These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum.

The COVID-19 pandemic imposed widespread impacts on the health and well-being of children with respiratory challenges and their families, as well as on the health care system that supports them. An exploratory qualitative study was undertaken to examine how the pandemic impacted families’ and health care providers’ daily lives and experiences of care. Four youth, 12 parents and 7 health care providers participated in interviews via telephone or online technology. Content analysis of transcribed interviews revealed participant experiences, including initial responses to the pandemic, adjustment to pandemic shifts, and anticipation of the future. While deleterious physical health impacts were minimal for children with pre-existing respiratory conditions, their mental health was negatively impacted by the pandemic and related health protocols. Families and health care providers experienced strain, yet demonstrated resilience. Pandemic-related shifts profoundly impacted daily life at home, school, and work. Pediatric pandemic planning in clinical care is recommended to better address the needs of children with respiratory conditions and their families as well as pediatric health care providers.

Background The Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child’s major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC). Methods This qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data. Results A multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC. Conclusions Care plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models of care.

As part of a participatory project to advance navigational service delivery systems for children with neurodevelopmental disability (NDD) and their families, this paper addresses proceedings from a capacity-building conference in Vancouver, Canada. A total of 29 invited key stakeholders attended the meeting with the following aims: knowledge sharing amongst provincial/territorial regions advancing NDD navigation capacity; sustainable action-oriented knowledge exchange; and operationalizing next steps to build navigation resources across Canadian regions. Regional representation included multiple and inter-sectoral partners (e.g., not-for-profit organizations, government, education, health, researchers, etc.) strategically invited to address mutually-agreed upon regional challenges, where ideas for envisioning, planning and success could be developed for ultimate operationalization in three Canadian provinces and one territory based on need for building navigational service delivery systems in NDD. Advancements in navigational service delivery were shared by site leads in the four represented regions of the initiative: Alberta, British Columbia, Quebec, and Yukon. Each regional lead conveyed targeted accomplishments, priorities and issues in moving navigation forward. Identified successes comprised the development of trusting partnerships across agencies and sectors, innovation and connection among service/navigation organizations and leaders, and training advances. Struggles included insufficient regional clarity on guiding principles for navigation services, a lack of resources relative to family need for services, and insufficient infrastructural supports in regions. Based on key learnings within and across regional groups, plans for regional development were strategized and shared.

This study examined roles and experiences of fathers of children with chronic kidney disease (CKD). Based on interpretive description, semistructured interviews were conducted with 22 fathers of children receiving a range of treatments (transplant, peritoneal dialysis, hemodialysis, and CKD not requiring renal replacement therapy). Fathers described various experiences and means of adjusting to shifts associated with pediatric CKD. These included loss of personal control, a sense of personal isolation, and a stance of remaining strong amidst personal suffering. Nuanced differences according to modality of CKD care were identified. Fathers engaged in strategies that fostered coping, such as remaining positive and taking charge. They conveyed deep love for their child, and demonstrated ingenuity and persistence in care. Few resources of support were accessed by fathers. Study recommendations invite holistic approaches to health care, with improved resources for families—including fathers—in addressing the needs of this population.

Background The COVID-19 pandemic fundamentally impacted the way that mental health services were provided. In order to prevent the spread of infection, many new public health precautions, including mandated use of masks, quarantine and isolation, and closures of many in-person activities, were implemented. Public health mandates made it necessary for mental health services to immediately shift their mode of delivery, creating increased confusion and stress for mental health providers. The objective of this study is to understand the impact of pandemics on the clinical and personal lives of mental health providers working with children during the early months of the COVID-19 pandemic, March -June 2020. Methods Mental health providers (n = 98) were recruited using purposive sampling from a public health service in Canada. Using qualitative methods, semi-structured focus groups were conducted to understand the experiences of mental health service providers during the beginning of the COVID-19 pandemic. Results Data from the focus groups were analysed and three main themes emerged: (1) shift to virtual delivery and working from home; (2) concerns about working in person; (3) exhaustion and stress from working through the pandemic. Discussion This study gave voice to mental health providers as they provided continuity of care throughout the uncertain early months of the pandemic. The results provide insight into the impact times of crisis have on mental health providers, as well as provide practical considerations for the future in terms of supervision and feedback mechanisms to validate experiences.

Background: The COVID-19 pandemic significantly disrupted health care delivery; however, limited research attention has addressed the impacts of the pandemic specifically on renal-based health care. Objective: The aim of the study was to understand the health and psychosocial impacts of the COVID-19 pandemic on care delivery as well as on health care providers (HCPs). Design: A qualitative Interpretive Description approach was used. Setting: Participants were recruited from kidney care units in Alberta and Ontario, Canada. Participants: 46 interdisciplinary HCPs providing kidney care during the pandemic participated in the study. Participants comprised pediatric (n=9) and adult (n=37) HCPs. Methods: Qualitative focus groups were facilitated. They were conducted using Zoom (Version 6.3.11). Results: Research results indicated substantial strain on patients and HCPs during the COVID-19 pandemic, including mental health difficulties. For HCPs, moral distress was experienced from witnessing negative impacts of the pandemic and care shifts on patients. HCPs were further deleteriously affected by staffing shortages, facility limitations due to care interruptions and resource gaps in health and community systems. Conversely, participants identified concurrent benefits from pandemic-related shifts such as the rapid transition to virtual care. While virtual care imposed challenges for physical assessment of patients, patient convenience and increased access to HCPs were noted. With training, support and experience, HCPs and patients reported an appreciation for communication offered by virtual care where appropriate. Supportive unit leaders and peer support from HCP colleagues were viewed to make this difficult experience of the pandemic more manageable. HCPs drew strength in being able to support their patients despite the difficulties of the pandemic. Limitations: Firsthand experiences of patients and families were not offered in this article, although their perspectives were elicited in another arm of this study. A more specific focus on pediatric versus adult systems of care, and the impacts of the pandemic on various disciplines, would add depth to understanding the unique impacts of the pandemic on various areas of care and across disciplines. Conclusions: Study results call for the advancement of clinical care and heightened consideration of HCP needs in a pandemic. Included recommendations are ensuring sufficient resources, prudent use of communication technology, and optimizing support to HCPs.