Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities.

Introduction: The UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers' experiences can promote the development of tailored public supports for these families following a public health crisis. Methods: Online survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families' and youths' experiences during the same period. Results: Five hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths' regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators. Conclusion: Prioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape.

Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network.

BACKGROUND: The CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how a PPM functioned to support parent-partners of children with disabilities in research projects within the Network. METHODS: In this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. When consent was provided, the PPM recorded interactions with network parent-partners in a communication report in an Excel form. Also, verbatim transcription from one in-depth interview with the PPM was included for data analysis using qualitative description. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. RESULTS: A total of 55 interactions between 25 parent-partners and the PPM were documented between May 2018 and June 2021. The PPM's support and liaison role contributed to adaptation of meeting schedules for parent-partners, amendment of the compensation guidelines, and ensuring that internal surveys and the newsletter were more accessible and engaging. The PPM also facilitated community-building by keeping parent-partners connected with researchers in the Network. Families and caregivers in the Network were comfortable sharing their experiences and emotions with the PPM who was also a parent herself, allowing researchers and the Network to learn more about parents' experiences in partnering with them and how to improve engagement. CONCLUSIONS: We highlight the important complementary role that a PPM can play in enhancing patient engagement in research by better understanding the experiences and needs of parent-partners.

In this paper, we add new insights into the complementary role of the Parent Peer Mentor (PPM) in promoting optimal patient engagement practices in a national patient-oriented research network. The PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. We analyzed the recorded interactions between the PPM and the network's parent-partners of children with brain-based disabilities as well as an interview with the PPM. The PPM's liaison role contributed to establishing reciprocal connections with parent-partners in a nation-wide research network. The perceived impacts at the individual level included: (1) parents felt more connected to the PPM and were comfortable sharing their experiences and emotions, and (2) researchers learned more about parents' experiences in partnering with them and were able to address the issues raised such as adjustment of the meeting schedule and clarification of roles within the research team. At the Network level, adjustments were made based on feedback from the PPM to include structural adaptations to the compensation guidelines and use of lay language in our communications to patient-partners. Community-building and authentic partnerships were enhanced by the increased understanding of the experiences of patient-partners.

Children with Disabilities in Canada during the COVID-19 Pandemic: An Analysis of COVID-19 Policies through a Disability Rights Lens.

Children with disabilities were especially vulnerable during the COVID-19 pandemic, and policies designed to mitigate its effects were limited in addressing their needs. We analyzed Canadian policies related to children with disabilities and their families during the COVID-19 pandemic to identify the extent to which these policies aligned with the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and responded to their mental health needs by conducting a systematic collection of Canadian provincial/territorial policies produced during the pandemic, building a categorization dictionary based on the UN CRPD, using text mining, and thematic analysis to identify policies' alignment with the UN CRPD and mental health supports. Mental health was addressed as a factor of importance in many policy documents, but specific interventions to promote or treat mental health were scarce. Most public health policies and recommendations are related to educational settings, demonstrating how public health for children with disabilities relies on education and community that may be out of the healthcare system and unavailable during extended periods of the pandemic. Policies often acknowledged the challenges faced by children with disabilities and their families but offered few mitigation strategies with limited considerations for human rights protection.

"Youth as accessories": Stakeholder Perspectives on Youth Participation in Mental Health Policymaking [Part II].

PURPOSE: To elicit stakeholder perspectives on the findings from our scoping review on youth participation in mental health policymaking, we conducted a global consultation with young people and adults directly involved in mental health policymaking. METHOD: Forty-four stakeholders from 16 countries, including 15 young people, 9 policymakers and 20 facilitators of youth participation, took part in individual interviews and/or focus groups. They were asked about how the review findings contrasted with their own experiences in mental health policymaking. The transcribed data were thematically analyzed. RESULTS: All participants viewed lived experience as valuable in identifying policy gaps. Youth pointed out that children and youth with disabilities, diverse sexual orientations, and/or gender identities were often excluded, and spoke about feelings of being an "accessory", illustrating a lack of power-sharing in a tokenized policymaking process. Adult participants' accounts highlighted the challenges inherent in policymaking such as the need for political knowledge and institutional time constraints. A range of cultural, socio-economic, and political barriers to youth participation, that were often context-specific, were identified. CONCLUSIONS: The diverse perspectives of stakeholders extended the review results. Based on our findings, we recommend that adults and institutions: (1) recognize lived experience as expertise in shaping mental health policies; (2) include diverse groups; (3) reduce tokenistic relationships through the creation of safer spaces, adult feedback, co-production, and social accountability; and (4) adopt an intersectional approach to address cultural, socio-economic, and political barriers to participation. Methodologically, our work demonstrates why stakeholder consultations are an essential component of scoping reviews.

Participation of Children and Youth in Mental Health Policymaking: A Scoping Review [Part I].

Although youth participation is oft-acknowledged as underpinning mental health policy and service reform, little robust evidence exists about the participation of children and youth in mental health policymaking. A scoping review based on Arksey and O'Malley's framework was conducted to identify and synthesize available information on children and youth's participation in mental health policymaking. Published studies up to November 30, 2020 were searched in Medline (OVID), PsycINFO (OVID), Scopus, and Applied Social Sciences Index and Abstracts (PROQUEST). Further studies were identified through Google Scholar and a grey literature search was conducted using Google and targeted web searches from October to December, 2020. Three reviewers performed screening and data extraction relevant to the review objective, followed by an online consultation. From 2,981 records, 25 publications were included. A lack of diversity among the youth involved was found. Youth were often involved in situational analysis and policy design, but seldom in policy implementation and evaluation. Both the facilitators of and barriers to participation were multifaceted and interconnected. Despite a range of expected outcomes of participation for youth, adults, organizations, and communities, perceived and actual effects were neither substantially explored nor reported. Our recommendations for mental health policymaking highlight the inclusion of children and youth from diverse groups, and the creation of relational spaces that ensure safety, inclusiveness, and diversity. Identified future research directions are: the outcomes of youth participation in mental health policymaking, the role of adults, and more generally, how the mental health of children and youth shapes and is shaped by the policymaking process.

Multiple Locations of Alcohol Use in the Narratives of the Peruvian Andean Highland and Population with Problem Drinking.

The present qualitative study explores local meanings and modes of interpretation of alcohol use among people with problem drinking in the Peruvian Andean highlands. We conducted individual interviews with 19 people in two districts of Ayacucho region identified as having engaged in problem drinking, using McGill Illness Narrative Interview Schedule. Participants articulated multi-layered associations between alcohol and the body, emotions, social relations, and shared cultural practices and understandings. In the explanatory model of physical distress, participants' problem drinking was often identified as one of the perceived causes or consequences. Moreover, many participants shared their experiences of interpersonal difficulties, such as family disintegration, separation from wife/girlfriend, and conjugal infidelity. These experiences resulted in psychological distress, often described by idioms of distress such as "pensamiento" (constant thinking) and "preocupación" (worrying thought), and the engagement with alcohol. At the same time, alcohol use is situated in participants' daily experience, where past and current interpersonal afflictions intersect with persistent economic hardship and injustice at a larger socio-economic level. Alcohol was seen as instrumental in navigating their social relations as well. Decisions and attitudes toward alcohol use in Ayacucho are shaped in the course of searching for opportunities to build, develop, and maintain interpersonal relationships with friends, colleagues, families, and community members. This study illustrates the importance of understanding the patients' life histories in clinical communication as well as the need for social policies to address the socio-economic determinants of hardship and illness that precipitate alcohol use in the south-central Andean highlands of Peru.

Control, power, and responsibility: a qualitative study of local perspectives on problem drinking in Peruvian Andean highlands.

BACKGROUND: Alcohol control has emerged as an important global health challenge due to the expanding influence of alcohol companies and limited control measures imposed by governments. In the Peruvian Andean highland, the ritual function of collective drinking is reported to have been weakened in response to the increased availability of alcohol and the experience of political violence. This study seeks to merge the broader political economy with local experience and culture to provide a deeper understanding of the dynamic between global processes and local realities. METHODS: We used purposive sampling to recruit participants. We conducted in-depth interviews (n = 28) and focus group discussions (n = 19) with community participants, teachers, health workers, alcohol vendors and police officers. Thematic analysis identified patterns of individual and collective meaning situated in relation to social, political and economic factors. RESULTS: Local perspectives and behaviour regarding loss of control over alcohol are shaped through the complex patterns of power and meaning exerted and experienced by different actors. Participants' emphasis on parents' lack of control over alcohol use by "abandoned" children reflects the structural vulnerability of some Andean families struggling with economic hardships. Participants also emphasized how alcohol consumption was tied to forms of control exerted by men in households. Participants expressed that some men demonstrated their masculine identity and symbolic power as the breadwinner through spending on alcohol. The third emphasis was tied to the market economy. Participants expressed that the expansion of the alcohol market and perceived absence of government control coupled with macroeconomic conditions, like poverty, shaped patterns of alcohol consumption. CONCLUSION: Our findings illustrate how problem drinking is shaped not simply by an individual drinker's lack of self-control but also by a regulatory environment that enables the unrestrained marketing of alcohol products and the creation of a culture of consumption. Harmful consumption is mediated by the reshaping of the Andean cultural practice of collective drinking. Attending to local perspectives is essential for policies and interventions that connect structural dynamics with the cultural and experiential aspects of alcohol consumption.

Regulation of intracellular formaldehyde toxicity during methanol metabolism of the methylotrophic yeast Pichia methanolica.

In this study we found that the methylotrophic yeast Pichia methanolica showed impaired growth on high methanol medium (>5%, or 1.56 M, methanol). In contrast, P. methanolica grew well on glucose medium containing 5% methanol, but the growth defects reappeared on glucose medium supplemented with 5 mM formaldehyde. During methanol growth of P. methanolica, formaldehyde accumulated in the medium up to 0.3 mM before it was consumed rapidly based on cell growth. These findings indicate that the growth defect of P. methanolica on high methanol media is not caused directly by methanol toxicity, but rather by formaldehyde, which is a key toxic intermediate of methanol metabolism. Moreover, during methanol growth of P. methanolica, expression of enzymes in the methanol-oxidation pathway were induced before the alcohol oxidase isozymes Mod1p and Mod2p, and Mod1p expression was induced before Mod2p. These results suggest that to avoid excess accumulation of formaldehyde-the toxic intermediate of methanol metabolism-P. methanolica grown on methanol strictly regulates the order in which methanol-metabolizing enzymes are expressed.

Follicle-stimulating hormone signaling and Foxl2 are involved in transcriptional regulation of aromatase gene during gonadal sex differentiation in Japanese flounder, Paralichthys olivaceus.

Japanese flounder (Paralichthys olivaceus), a teleost fish that has XX (female)/XY (male) sex determination system, exhibits temperature-dependent sex determination. We have previously shown that high water temperature or an aromatase inhibitor treatment causes the sex-reversal from genetic females to phenotypic males and suppression of mRNA expression of ovary-type P450 aromatase (cyp19a1), a steroidogenic enzyme responsible for the conversion of androgens to estrogens, in Japanese flounder. In the present study, we demonstrate that high water temperature treatment suppresses specifically mRNA expression of the forkhead transcription factor gene foxl2, and follicle-stimulating hormone receptor (fshr) in gonads during early sex differentiation. Moreover, transient transfection assay shows that the flounder Foxl2 and cAMP analog can activate the cyp19a1 gene transcription in vitro. These results strongly suggest that FSH signaling and Foxl2 are involved in the transcriptional regulation of cyp19a1 gene during gonadal sex differentiation in Japanese flounder with temperature-dependent sex determination.