For autistic persons by autistic persons: Acceptability of a structured peer support service according to key stakeholders.

INTRODUCTION: Social support is a protective factor in the mental health of autistic people. Furthermore, prejudice regarding autistic people is a constraint for the development of social support programmes by autistic peers. METHODS: The objective of this study is to describe the anticipated acceptability of structured peer support programmes for and by autistic persons. Fifteen key stakeholders (six autistic adults, four caregivers and five service providers) participated in in-depth semistructured interviews. A qualitative thematic analysis of the content of the verbatim was carried out. FINDINGS: We found that while a structured peer social support programme is acceptable to autistic people and caregivers, there was no consensus among service providers. The latter expressed doubts about the ability of autistic people to offer support. The framing of discussions between peers, the training of peer helpers, the support for autistic leadership and an organization that considers the communicational and sensory characteristics of autistic persons, could influence adherence to such a programme. Moreover, a space without service providers is an important condition for the acceptability of a peer support programme. CONCLUSION: A structured peer support service for and by autistic persons could be an innovative way to answer the unmet support needs of autistic people. It seems essential to anticipate potential barriers and facilitators and to communicate among health professionals to promote this approach and reduce possible prejudice about the ability of autistic people to offer support to their peers. More studies are necessary. PATIENT OR PUBLIC CONTRIBUTION: Fifteen key stakeholders who are involved in autistic people's trajectory of service and support participated in this research. We are a research team composed of healthcare professionals and researchers, in addition to one member of our team being an autistic advocate and a mental health peer-support mentor. Two members of our team are also parents of autistic children. The comprehensibility of the questions for the interview was consulted and discussed with one autistic advocate-collaborator.

Person-reported perspectives on support availability for people with disabilities during the COVID-19 pandemic in Quebec.

OBJECTIVES: To identify the perception of the availability of community support and the support needs of autistic people and people with disabilities, from their own perspectives and from those of their caregivers at the time of the COVID-19 pandemic in Quebec, to assess the association between the available support and the perceived stress levels to evaluate the role of perceived social support as a potential buffer of this association. METHODS: A total of 315 respondents participated in a 4-min online survey across the province of Quebec by snowball sampling. Community support was defined as availability of adapted healthcare, adapted information, adapted educational services and community services. RESULTS: The community support and services during the COVID-19 pandemic were not available or were not sufficiently adapted to their needs. About 40% of autistic people or people with disabilities and 44% of their caregivers perceived their days as being quite stressful or extremely stressful. This is twice the rate of that of the general population in non-pandemic time. Nevertheless, social supports can play a mediating role in attenuating the effects of the absence of adapted services on the stress level of this vulnerable population. CONCLUSION: The non-availability of adapted services was related to an increase in the stress level in this population. Our study adds that other than social support, adapted healthcare/tele-healthcare and in-home support services could reduce the impact of the pandemic on the stress level of autistic people and people with disabilities. Adapted educational services and necessary equipment for online education for people without resources could reduce the impact on the stress level in caregivers. People with disabilities and their caregivers are one of the most vulnerable groups in our society. Public health measures of containment and mitigation need to consider more their specific needs.

RéSUMé: OBJECTIF: Identifier la perception de la disponibilité du soutien communautaire et les besoins de soutien des personnes autistes et des personnes en situation de handicap, de leurs perspectives mêmes et de celles de leurs aidants durant la pandémie de COVID-19 au Québec, et évaluer l'association entre le soutien disponible et les niveaux de stress perçus afin d'évaluer le rôle du soutien social perçu comme un médiateur de cette association. MéTHODE: Un total de 315 répondants ont participé à un sondage en ligne de 4 minutes à travers la province de Québec par échantillonnage en boule de neige. Le soutien communautaire a été défini comme la disponibilité de soins de santé, d'informations, et de services éducatifs et communautaires adaptés à leurs besoins. RéSULTATS: Le soutien communautaire, et les services disponibles pendant la pandémie de la COVID-19, n'étaient pas disponibles ou étaient insuffisamment adaptés à leurs besoins. Environ 40 % des personnes autistes ou en situation de handicap et 44 % de leurs proches aidants perçoivent leurs journées comme assez ou extrêmement stressantes. C'est deux fois plus que le taux dans la population générale en période non pandémique. Néanmoins, le soutien social peut jouer un rôle médiateur en atténuant les effets de l'absence de services adaptés sur le niveau de stress de ces populations vulnérables. CONCLUSION: La non-disponibilité de services adaptés augmente le niveau de stress de cette population. Notre étude ajoute que, outre le soutien social, les soins de santé adaptés, les services de soutien à domicile et les soins de santé à distance pourraient réduire l'impact de la pandémie sur le niveau de stress des personnes autistes et en situation de handicap et que les services éducatifs adaptés et l'aide à l'éducation à distance pourraient réduire l'impact sur le niveau de stress des proches aidants. Les personnes en situation de handicap et leurs proches aidants constituent l'un des groupes les plus vulnérables de notre société. Les mesures de santé publique d'atténuation de la pandémie doivent tenir compte de leurs besoins.

Acceptability of Serious Games in Pediatric Asthma Education and Self-management: Pilot Study.

BACKGROUND: Asthma is the most common chronic pediatric disease. Despite existing tools to manage asthma, 40%-55% of children with asthma experience uncontrolled asthma. Serious games (SGs) represent a novel approach in promoting asthma education and self-management for children. OBJECTIVE: In this qualitative pilot study with an embedded quantitative design, we aim to use focus groups and questionnaires to describe the perceived role of SGs in different aspects of asthma self-management by children and their parents. These aspects include asthma perception and knowledge, the impact of asthma and barriers to asthma self-management, and the support system for asthma self-management. METHODS: A total of 5 children with asthma and their parents were invited to participate in an organized gaming session. Children and their parents completed a pregaming questionnaire on their medical history and asthma knowledge. Then, they were invited to test 4 original SG prototypes, after which the children answered a postgaming questionnaire on their asthma knowledge and perception of the SGs. Children and their parents subsequently participated in parallel focus groups, which were video-recorded or audio-recorded, transcribed verbatim, and analyzed by reaching consensus among members of the research team. RESULTS: The mean age of the children was 10.3 (SD 1.5) years, with 20% (1/5) of the children being male. Qualitative data from the transcripts were coded into three separate domains: asthma self-management perception and knowledge, impact of asthma and barriers to asthma self-management, and support system for asthma self-management. We specifically explored the perceived roles of SGs within each domain. A key takeaway message was identified for each of these three domains: heterogeneity of asthma knowledge and the ability of SGs to encourage knowledge transfer through games, consequences and limitations of asthma and the ability of SGs to allow for identification and management of real-life situations through games, and insufficient support system and the ability of SGs to encourage playing with others for support and shared knowledge. CONCLUSIONS: Our pilot study explored the role of SGs in the self-management of asthma, as perceived by children and their parents. Our findings support the acceptability of SGs in asthma education and self-management in pediatrics and the necessity for future development in this field.

Portrayal of Domestic Violence Trajectories During the Perinatal Period.

Domestic violence during the perinatal period (DVPP) refers to the various ways that women's partners or ex-partners control and coerce them during pregnancy and the 2 years postpartum. From the descriptions of 17 women with firsthand experience of DVPP, this article reports on its manifestations and the associated contexts. The results reveal escalating violence, diverse forms of violence, and exacerbated consequences over the perinatal period. The contexts that pose additional challenges for the women include financial precariousness and the partner's substance abuse, and to a lesser extent the residential situation.

[Health Literacy Issues of Parents Seeking Information on Autism Spectrum Disorder Around Time of Diagnosis]. / Les enjeux de littératie dans la communication aux parents du diagnostic de trouble du spectre de l'autisme chez l'enfant.

Objectives Informing parents whose child has just been diagnosed with Autism Spectrum Disorder (ASD) is a major challenge. The purpose of this research is to identify the informational needs of parents of children recently diagnosed with ASD as well as the barriers and facilitators encountered in their search for information. Methods Qualitative research using the focus group method was conducted with three groups of parents of young children or adolescents diagnosed with ASD within the last two years. Parents were recruited through a hospital clinic. Two groups were parents with one or more risk factors related to low health literacy: single parenthood, low level of schooling, unemployment, recent immigration. A qualitative content analysis was conducted to explore the process of searching for information on autism. Based on the theoretical framework of health literacy, various components were analyzed in terms of access, understanding, interpretation, and use of information for decision-making. Results The results display that there is a general lack of information on autism, as well as concerns about the quality of the information found on the Internet. All parents expressed difficulty understanding the information they found on their own or in the resources, they were offered. They also shared a desire to access sources of information that present autism in a positive way. The use of information for decision-making was limited. In addition, the obstacles encountered while searching for information revealed the importance of social support. Many of the parents reported feeling stigmatized and judged by others because of their child's behavior. Conclusions The results demonstrate the need to respond to the real informational needs of parents and to adapt the resources used during the diagnosis period, particularly for those with lower literacy levels. In addition, the way of communicating about the diagnosis needs to be reviewed. In order to address these literacy issues, it is important to offer various forms of social support in combination with informational support. In order to reduce psychological distress, it is necessary to provide support when announcing the diagnosis and raise awareness about autism to reduce the stigma experienced by autistic persons and their loved ones.

Sexually Transmitted and Blood-Borne Infections in Pregnant Women and Adverse Pregnancy Outcomes.

OBJECTIVES: To analyze risk factors for the presence of sexually transmitted and blood-borne infections (STBBIs) in pregnancy and to determine whether pregnant women with STBBIs are more likely to experience adverse pregnancy outcomes. METHODS: This retrospective cohort study involved analyzing the electronic records of 3460 pregnant women followed at Sainte-Justine Hospital in Montréal, Québec, between March 2017 and January 2019. An outcome is defined as a pregnancy where the woman has at least one positive laboratory result for chlamydia, gonorrhea, syphilis, hepatitis B, or hepatitis C (i.e., has one or multiple STBBIs). We performed a logistic regression analysis to determine adjusted odds ratios (aORs) for the risk factors of STBBIs in pregnant women. RESULTS: We identified 84 positive STBBI cases, an overall prevalence of 2.4% (95% CI 1.9-2.9). A logistic regression analysis showed the following factors to be significantly associated with the presence of STBBIs in pregnancy: age <20 years (OR 4.75; 95% CI 1.89-11.96), age 20-29 years (OR 2.38; 95% CI 1.37-4.14), Afro-Caribbean origin (OR 4.12; 95% CI 1.83-9.27), other non-Caucasian origin (OR 2.38; 95% CI 1.20-4.70), and history of STBBIs (OR 2.33; 95% CI 1.02-5.36). STBBIs were not significantly associated with social and material deprivation indices nor were they associated with low birth weight or preterm birth. CONCLUSION: This study shows age <20 years, age 20-29 years, Afro-Caribbean or other non-Caucasian origin and history of STBBIs to be risk factors for the presence of STBBIs in pregnancy. These results will allow us to propose interventions to reduce STBBIs in women with common risk factors as part of a comprehensive approach to perinatal care.

[Online social support as a mode of psychosocial intervention: A review of scientific literature, avenues for future research, and recommendations for practitioners]. / Le soutien social en ligne comme mode d'intervention psychosociale : revue de littérature, pistes de recherche et recommandations pour les intervenants.

OBJECTIVE: The goal of this review is to present online social support interventions described in recent scientific literature, in order to (i) guide organizations wishing to develop such an intervention or to improve an existing program, and (ii) to identify future research directions and recommendations for practitioners. METHODS AND RESULTS: 59 peer-reviewed articles presenting online social support interventions (2006-2016) were analyzed by using a thematic grid focusing on theoretical perspectives on social support, the online platforms used and their functionalities, the process of intervention development and evaluation, the modalities of participation and the facilitation methods, the documented impacts of interventions, and finally future research directions and recommendations for practitioners. A narrative methodology was used to identify challenges in intervention development and implementation, in order to provide guidance to organizations who want to develop or improve their online social support services. CONCLUSIONS: Several research directions and recommendations for the development of online social support interventions are suggested, including the need to develop theoretical models of online social support and enrich traditional models of social support, the need to understand the benefits associated with different levels of participation, the importance of needs assessment in the development of interventions, and the contribution of qualitative methods to the evaluation of interventions.

[Knowledge and attitudes toward vaccination among midwives in Quebec]. / Attitudes et croyances des sages-femmes québécoises sur la vaccination.

OBJECTIVES: Vaccine acceptability among Quebec midwives is not well documented. The purpose of this study was to examine midwives' knowledge, attitudes and practices relating to immunization in Quebec. METHODS: Semi-structured interviews were conducted with 25 participants (17 midwives and 8 midwifery students). The mean duration of the interviews was 1 hour. The interviews were conducted in 2010 and were audiotaped, transcribed and submitted to content analysis using NVivo 8 software. RESULTS: In addition to the laws regulating midwifery practice in Quebec, the findings suggest that most midwifery interventions are based on midwifery philosophy. Informed choice is one of the key principles of this philosophy. In order to help women make an informed decision about vaccination, midwives seek to outline the pros and cons of vaccination using government documentation, as well as other sources such as books on naturopathy. Most of the participating midwives recognized that vaccination has advantages, including disease prevention and free vaccines. Various arguments against vaccination were also identified. Most of these were related to the vaccination schedule and to combined vaccines. Some of the participants noted that it was difficult to find unbiased information about vaccination. CONCLUSION: This study highlights the key role of midwifery philosophy in midwifery practice. Most decisions (such as vaccination) are made on the basis of the principle of informed choice. Most of the participants noted that they lacked information on vaccination.