Search

Abstract 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.

Abstract 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 (

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.

Abstract 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.

Purpose 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. Methods Using the qualitative, exploratory approach of the Enhanced Critical Incident Technique, eight autistic adults took part in interviews. Results 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. Conclusions 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.

Given the demand to better address the principles of equity, diversity, inclusion, and accessibility in higher education, research into both barriers and promising practices to support autistic students on post-secondary campuses has advanced significantly in the last decade. The objective of this scoping review is to identify, map, and characterize literature that enumerates and describes supports for autistic post-secondary students. This scoping review was limited to peer-reviewed research published between January 2012 and May 2022, in these databases: Web of Science, PsycINFO, Medline, EMBASE, ERIC, Social Work Abstracts, Social Services Abstracts, and EMCARE. The review aligns to Joanna Briggs Institute methodology for scoping reviews and includes consultation with an expert panel made up of the Autistic Community Partners–four autistic individuals with postsecondary experience who acted as co-researchers. Literature on creating accessible campuses were mapped in three ways: (1) through the four domains of the PASS Taxonomy; (2) ten support categories characterizing types of supports, and (3) nine emergent themes, based on autistic experiences on support and campus navigation, were inductively and iteratively coded throughout process. This review summarizes both areas that have been researched and under-studied areas in the literature that act as contributors or challenges for autistic students on postsecondary campuses. It was also the first scoping review, to our knowledge, to integrate lived experience within the methods and results analysis to describe the current state of the evidence on post-secondary campuses. Mapping the literature in known and emerging categories indicated that broad categories of support are experienced variably by autistic students. Findings provide multiple avenues for future research.

Purpose 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. Methods 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. Results 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. Conclusion These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum.

Background 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. Objective 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. Method Interpretive descriptive design was used to guide data collection and data analysis. Forty caregivers were interviewed about their experience with pandemic restrictions. Findings 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. Recommendations 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.

Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research.

Self-determination enhances a person's quality of life and is a fundamental human right. According to self-determination theory, autonomy is one of three basic psychological needs that must be met to experience self-determination. The overarching aim of this exploratory study was to learn about autonomy from the perspective of autistic adults with intellectual disability, including what autonomy meant and how participants wanted to be supported to be autonomous. Participants (n = 8; median age = 24) engaged in a variety of participatory methods (e.g. discussions, arts and crafts, games) during weekly sessions. These sessions took place over 7-16 weeks and were each informed by a guiding question related to autonomy. Artifacts, video or audio recordings from each session, and reflexive journals were thematically analyzed. The results support an overarching meaning of autonomy as being able to be themselves. Participants identified (1) choice and control, (2) communicating their way, and (3) safe environments as important and showed us how they wanted to be supported in each of these three areas. We also identified having autistic facilitators as an overarching strategy. These results provide a foundation for implementing change to enhance autonomy for autistic adults with intellectual disabilities.

Autistic adults experience disproportionate rates of co-occurring mental health problems. Psychotherapy has been recognized as an appropriate treatment approach, but evidence is limited. Researchers used a qualitative research paradigm to explore the experiences of mental health providers who provide psychotherapy to autistic adults. The Enhanced Critical Incident Technique was used to interview 13 mental health providers regarding perceptions of facilitating therapy with autistic adults. This research highlights challenges to providing psychotherapy to autistic adults while also illuminating ways that mental health providers have worked to ameliorate such challenges and create positive experiences in therapy. This research also contrasts therapy for autistic adults relative to the general population. Practice recommendations and suggestions for future research are offered.

Like other recipients of health care services, pediatric patients and their families/caregivers have been profoundly impacted by health care shifts and broader societal restrictions associated with the COVID-19 pandemic. An online roundtable discussion was facilitated with 7 pediatric clinicians and investigators of a current study examining the impacts of COVID-19 on pediatric care at multiple Canadian sites. Discussants represented a range of pediatric specialities: developmental disability, mental health, cardiac transplantation, respiratory medicine, hematology, and palliative care. We offer the transcript of the roundtable in which discussants reflected on clinical and programmatic experiences of the pandemic, including perceived impacts on children receiving care and their families, potential opportunities for improved health care delivery, impacts on health care providers, and recommendations as we move toward easing restrictions and pandemic recovery. Discussants convey a range of considerations that may have varying relevance for pediatric specialities in terms of practice and program planning.

Parents of children with autism assume substantial responsibility for navigating intervention to address autism-related concerns, including involvement in therapy. Little is known, from the perspective of these parents, regarding how to best engage and support them in this navigating process as it evolves over the child’s development. In this article, we present findings from a large qualitative study that investigated how parents of children with autism navigate intervention, to construct an in-depth theoretical account of how this group comes to be engaged in individual-level care. Using grounded theory methods and a symbolic interactionist framework, we analyzed select documents and 45 intensive interviews conducted with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Parent-defined concerns are the central impetus for the core process of navigating intervention, labeled using parents’ language making your own way. We describe how this process is analogous to engaging in care. Four meaning-making processes – defining concerns, informing the self, seeing what is involved, and adapting emotionally – all interacting in an ongoing fashion, together account for parents’ evolving readiness and motivation for taking action to navigate intervention. We illustrate how parents’ readiness and motivation for navigating intervention (and thus for engagement) evolves over a generalized trajectory, according to three highly overlapping processes experienced by most parents: coming to understand their child has autism, going into high gear, and easing off. These findings indicate multiple empirical conditions and factors affecting engagement that service planners and professionals will likely want to consider when seeking parent involvement as a means to improve outcomes in autism. Additionally, theoretical aspects are relevant to the developing understanding of how healthcare consumers in general become engaged in individual care, with implications for patient-centered care.

This study explored the experiences of mothers caring for an individual with autism spectrum disorder (ASD) ranging from 5 to 25 years of age, and examined pervasive tensions in caregiving. Guided by ethnographic methods, a retrospective cross-sectional study was conducted. Interviews with 85 mothers were analyzed inductively. Prevalent tensions in maternal caregiving were identified: (a) difficulties obtaining, yet resistance to, an ASD diagnosis; (b) identified giftedness of the child versus notions of deficit imposed by others; (c) disability-related behaviors erroneously interpreted as ‘poor parenting’; (d) contradictory considerations in diagnosis disclosure; (e) the invisibility yet pervasiveness of ASD; (f) extensive need for, yet the lack of, accessible services; (g) ASD-related care demands versus other pressing responsibilities; (h) arguments for inclusive versus exclusive services; and (i) aims of nurturing independence versus managing safety risk. Tensions were heightened by insufficient supports relative to need. Implications and recommendations for practice and policy are offered.

CommunityWorks Canada ® is a 12-week (30-hour) program that provides social, communication, and job skill–building activities as well as peer mentorship to youth with autism spectrum disorder. Administration of a pre- and postprogram employment readiness measure (n = 76 participants) demonstrated positive changes as reflected by the participants’ decreased concerns about their responsibility, flexibility, job skills, communication, self-view, and health and safety. Postprogram qualitative interviews and survey data collected from a range of program stakeholders (participants, parents, peer mentors, and community partners/employers) corroborated identified gains in personal development, employment exposure, work proficiency, and comfort in work settings. For community partners/employers and peer mentors, greater understanding about autism spectrum disorder and commitment to inclusive hiring reportedly resulted from program engagement. Implications and recommendations are offered.

Industry-led employment programmes have emerged to transition autistic people into employment and meet industry labour needs. However, theoretical research is limited in this area, often failing to appreciate the influence of the broader employment ecosystem. In this study, we interviewed 33 autistic employees (n = 29 males, M[subscript age] = 29.00 years) from two industry-led employment programmes regarding their experience of the programme's supports, relationships and impact. We used qualitative content analysis to identify five themes: (1) working involves multiple job tasks that evolve as the employment context changes; (2) workplace relations are diverse and shaped by the type of work and the work environment; (3) workplace needs evolve as autistic individuals navigate the work environment; (4) developing a professional identity in the workplace through mastery and integration; and (5) recommendations for the development of supportive workplace environments for autistic individuals. We describe the way that factors within (e.g. training) and outside the two employment programmes changed and interacted over time to contribute to the participant's work experience and professional identity. Building on ecological systems theory, our unique contribution to the literature is a new model capturing individual and workplace factors that contribute to the work experience of autistic people who participate in industry employment programmes.

Autism spectrum disorder (ASD) is the most commonly diagnosed neurological disorder in children. Adults with ASD have some of the poorest employment outcomes in comparison to others with disabilities. While data in Canada is limited, roughly 25 per cent of Americans living with ASD are employed and no more than six per cent are competitively employed. Most earn less than the national minimum hourly wage, endure extended periods of joblessness and frequently shuffle between positions, further diminishing their prospects. Poor employment outcomes result in lower quality of life and often lead to steep economic costs. Governments are wise to pay attention to the poor employment outcomes as the high numbers of children now diagnosed with ASD will become adults in the future in need of employment opportunities. Improving employment outcomes for those living with ASD is an important policy objective. Work opportunities improve quality of life, economic independence, social integration, and ultimately benefit all. Adults with ASD can succeed with the right supports. Fortunately, there are many emerging policy and program options that demonstrate success. This paper conducts a review of studies and provides policy recommendations based on the literature, to help governments identify appropriate policy options. Some key factors are both those that are unique to the individual and the external supports available; namely school, work, and family. For example, factors that contribute to successful employment for people living with ASD may include IQ, social skills and self-determination, but for all, even for the less advantaged, external assistance from schools, employers and family can help. Inclusive special education programs in high school that offer work experiences are critical as are knowledgeable employers who can provide the right types of accommodation and leadership. In the work environment the use of vocational and rehabilitative supports, from job coaching to technology-mediated training are a few of the work related factors that enhance success. Information in this paper provides policy makers with a way to move forward and enhance the current employment situation for those living with ASD ultimately improving quality of life and economic independence.

Individuals diagnosed with developmental disability and mental illness (a “dual diagnosis”) contend with multiple challenges and system-related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis ( n = 7) and their caregiving parents ( n = 8) to examine care-related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system-related care gaps. Recommendations include person- and family-centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended.

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.

Claims have been made that families with children living with autism spectrum disorders (ASD) have been migrating to Alberta because of higher funding available for ASD supports compared to other provinces. The legitimacy of these claims, along with many others about the adequacy or inadequacy of funding for supporting persons living with ASD, has not been evaluated because we simply don’t know how many people in Alberta are living with ASD. Typically in Canada, ASD prevalence is reported in national figures, based on international estimates. Canadian prevalence estimates for ASD are needed. With no national surveillance system in place, national estimates are difficult to determine. In addition, such broad measurements are problematic as they may not adequately inform the service delivery needs for specific jurisdictions. A new study shows that 1,711, or 1 in 94, school age children in the Calgary region have an ASD diagnosis. As this number matches what is often reported for the national prevalence of ASD, it suggests that Alberta’s relatively higher ASD funding is not inducing in-migration of families seeking better support. The data also show that the prevalence is higher in elementary-grade children, with a diagnosis in one of every 86 children. In the senior grades, there are significantly fewer students with ASD diagnoses, specifically within the Calgary Board of Education. There is no evident reason for diagnoses to seemingly dematerialize in the older grades. These students could be dropping out or choosing home-schooling in greater numbers. Possibly there has been an increase in prevalence. These prevalence estimates help to inform the demand for special-needs services within the local school system. In addition, there is growing concern that upon graduation there is a “support cliff” resulting from a less systematized, less generous support system available for adults with neurodevelopmental disability. Families that need support for ASD face enough challenges; it is critical for policy-makers to be aware of the extent of the situation in their own jurisdiction so as to develop the right kinds of supports for these families.

With improved survival outcomes after pediatric liver transplantation (LT), health-related quality of life (HRQoL) is an important outcome metric. Understanding the elements contributing to HRQoL after LT in children would enable more targeted strategies towards optimizing best outcomes. This qualitative study aimed to explore health care providers (HCP) perceptions about HRQoL after pediatric LT. Thirteen experienced HCP participated in two focus group discussions. Data analysis via a thematic analysis approach revealed 4 major themes: “LT as a facilitator of better HRQoL,” “coping and adapting to LT,” “living with a transplanted liver,” and “the family context.” HCP identified elements that both enhance (improved physical health, peer relationship, and activities of daily living) and challenge (need for immunosuppression, transplant follow-up, and restrictions) the multidimensional domains of HRQoL. HCP perceived LT to be a stressful life-changing event for children and their families. Patients and their parents’ ability to cope and adjust positively to LT was perceived as a key contributor to better HRQoL. HCP perspective highlights the importance of promoting psychosocial support and a family-centered care delivery model towards the overarching goal of optimizing durable outcomes.

In this study the authors examined Internet-mediated qualitative data collection methods among a sample of children with chronic health conditions. Specifically, focus groups via Internet technology were contrasted to traditional face-to-face focus groups. Internet focus groups consisted of asynchronous text-based chat rooms lasting a total of one week in duration. Participants comprised 23 children with cerebral palsy, spina bifida, or cystic fibrosis, who were assigned to either an Internet or face-to-face focus group. Focus group analysis and follow-up participant interviews identified a range of content outcomes and processes as well as participant experiences and preferences. Findings yielded differences in terms of the volume and nature of online and face-to-face data, and participants' affinity to focus group modality appeared to reflect differences in participant expectations for social engagement and interaction. This study identifies both benefits and limitations of asynchronous, text-based online focus groups. Implications and recommendations are discussed.

Drawing on a realist synthesis approach, this review identified qualitative data collection approaches that inform "first-person" lived experience in autism spectrum disorder (ASD) across phenotypic expression. It further drew upon methodologic approaches used in other conditions that similarly represent individuals with impaired verbal expression. The aim of this realist synthesis approach was to identify methods with relevance to participants across the autism spectrum. Methods that emerged for eliciting first-hand perspectives consisted of photovoice, Talking Mats, "deep assessment," SenseCam, and TimeSlips. Applying these methodologies in ASD has the potential to advance knowledge about the quality of life, priorities and needs of people with ASD, and advanced qualitative approaches beyond methods that are not inclusive of cognitive and expressive diversity.