A Window into the Use of Post-diagnostic Services for Autism and Parents' Perspective on the Quality of Early Childhood Services Trajectory in a Canadian Province.

The pathway for post-diagnostic services for autism tends to be complex, heterogeneous, and fraught with delays. This situation has repercussions for families' experience with care systems, the quality of early interventions, and family adjustment. To date, studies of parents' point of view on autism services have predominantly focused on the diagnostic phase of the services trajectory. The goal of the present study was to investigate the perspective of parents on autism early childhood services within a public healthcare and social services system in a Canadian province (Québec). Participants were 91 parents who completed a structured framework for the evaluation of the quality of services trajectories, the Evaluation of the services Trajectory in Autism by Parents (ETAP; Mello et al., in Research in Developmental Disabilities 133, 2023). Approximately three-quarters of families received interim services (e.g., punctual speech therapy interventions) for which they had overall neutral-to-positive appraisals but viewed as having comparably low validity and continuity. Although all children diagnosed with autism are entitled to receive early behavioral intervention (EBI) dispensed by the public health and social services system, approximately a quarter of families did not receive this service. Families who received EBI evaluated this service positively on all ETAP dimensions. The empathy (i.e., parent-provider relationships) dimension was rated highest for both interim and EBI services. Some systemic, family, and child-related factors were associated with the perceived quality of services for both interim and early childhood services. Our results emphasize the need for services for children and families as soon as possible, both during assessment and after diagnosis.

Job Satisfaction for Caregivers and Other Employees in Innovative Long-Term Care Homes for Residents With Cognitive Problems.

New housing models have emerged in Europe, Australia, the United States, and Canada. Intended for individuals with neurocognitive disorders, these models are characterized by a philosophy centered on the person, self-determination, liberty of choice, flexibility of care, acceptance of risk, and autonomy. Work and care are organized according to the pace and preferences of residents. The current multiple case study highlights the main sources of job satisfaction for caregivers and other employees in four innovative residential settings. Five themes are addressed as perceived by 58 employees: Work Motivation, Work Organization, Collaboration and Decision-Making Latitude, Quality of Work Life, and Continuing Education. These data will help inform clinical staff, policymakers, and the scientific community about clinical and organizational practices that contribute to job satisfaction in innovative residential settings. [Journal of Gerontological Nursing, 49(10), 36-43.].

Barriers and facilitators to accessibility, continuity, validity, flexibility, and provider-family relationship along the diagnostic pathway in developmental disabilities.

BACKGROUND: Parents of children with developmental disabilities must navigate a complex network to obtain a diagnosis and interventions for their child. However, their subjective experience of this journey has yet to be analyzed through the lens of a theorical framework that could support research, organizational program evaluation, and facilitate providers' reflection on how to enhance families' diagnostic services trajectory. AIMS: This study sought to examine the diagnostic journey as experienced by 77 parents whose children were recently diagnosed with developmental disabilities (e.g., autism, intellectual disability) in the metropolitan area of Montréal, Québec (Canada). METHODS AND PROCEDURES: A mixed qualitative content analysis approach was used to describe their perspective on barriers and facilitators in reference to the five dimensions of the Evaluation of the Trajectory Autism for Parents (ETAP) model (Rivard et al., 2020): accessibility, continuity, validity, flexibility, and provider-family relationship. OUTCOMES AND RESULTS: The barriers and facilitators related to systemic factors identified by parents were consistent with the five dimensions outlined by the ETAP model. However, beyond these characteristics of the service delivery system, parents additionally identified their own, personal facilitators CONCLUSIONS AND IMPLICATIONS: This study supports the relevance of the ETAP framework to understanding the experience of families seeking a diagnosis. It also reinforces the potential contributions of this model to organize extant and future research as well as structure program evaluation and improvements.

Assessing the quality of care and service trajectories in autism from families' perspective: Early intervention and interim services.

BACKGROUND: Following the Evaluation of the Autism Trajectory for Parents - Diagnostic Services (ETAP-1), the ETAP-2 instrument was created to assess the quality of the post-diagnostic phase of the care and service trajectory of families of children with autism. The instrument, based on an integrated care perspective, was developed with the input of multiple stakeholders (parents, service providers, researchers). AIMS: This study sought to evaluate the factor structure, reliability, and convergent and discriminant validity of ETAP-2. METHODS AND PROCEDURES: Parents (N = 197) of children recently diagnosed with autism (M = 5.1 years) were recruited from an assessment center and organizations providing early behavioral intervention and other supports for autism in the province of Québec, Canada. They completed the ETAP-2 questionnaire along with measures of satisfaction and family quality of life. OUTCOMES AND RESULTS: The instrument presented a five-construct structure generally consistent with previously identified dimensions of quality, except for three items previously associated with the continuity of the service trajectory. ETAP-2 had excellent internal consistency and demonstrated convergent and discriminant validity with other measures. CONCLUSIONS AND IMPLICATIONS: ETAP-2 is a brief parent-report measure with good psychometric properties. It can assist in gathering information on families' perception and experiences with early intervention and other post-diagnostic, interim services.

The Diagnostic Period for Autism: Risk and Protective Factors for Family Quality of Life in Early Childhood.

During the diagnostic evaluation period for autism or intellectual disability (ID), families of young children are at risk for poor adjustment. The present study aimed to document family quality of life (FQOL), along with associated risk and protective factors, during this critical step of families' services trajectory. FQOL was measured in a large sample of families of children recently diagnosed with a neurodevelopmental disorder and examined in relation to the type of services received, children's clinical profile, and family variables. FQOL was related to types of services, children's challenging behavior, parenting stress, and several aspects of family composition and status. These findings highlight a need for mental health support for parents, coaching interventions for challenging behaviors, and family-centered supports.

Developmental and behavioral groupings can predict changes in adaptive behavior over time in young children with neurodevelopmental disorders.

The heterogeneity within, and the overlap between, diagnostic categories for neurodevelopmental disorders (NDDs) remain poorly understood. Developmental trajectories may diverge among children with the same diagnosis, who may also respond very differently to treatment. In a previous study, we used statistical clustering methods in a sample of 194 preschoolers who were referred for NDD assessment. We identified three distinct subgroups based on multiple developmental and behavioral variables. The present study aimed to identify: (1) early developmental markers at the surveillance and screening period that are predictive of subgroup membership at the diagnostic period (i.e., around age 5), (2) associations between subgroups and the evolution of adaptive behavior over the course of two years, and (3) predictors of adaptive behavior change. Subgroup membership was the only significant predictor of adaptive behavior change over time, which suggests that a clustering method based on developmental and behavioral profiles may be useful in treatment planning.

Cluster Analysis of Clinical Features of Children Suspected to Have Neurodevelopmental Disorders.

Early identification of neurodevelopmental disabilities (NDDs) is critical to a good prognosis. Several factors such as overlapping diagnoses can complicate this process and thus delay access to services. This study sought to identify meaningful clinical profiles, beyond diagnostic labels, in 194 children with NDDs referred to an assessment clinic. Cluster analyses were applied to eight selected behavioral and cognitive variables. Results suggested a cluster structure in which three homogenous groups differed significantly from one another: children who presented either (1) heterogeneous diagnoses and ambiguous profiles, (2) a clinical profile closely aligned to a classic presentation of ASD, and (3) emotional and behavioral challenges. These distinct profiles may have implications for assessment and clinical practices.

Parents' satisfaction with a Canadian pilot clinic to reduce waiting lists for the assessment and diagnosis of autism spectrum disorder and intellectual disability in young children.

BACKGROUND: A large body of evidence suggest that parents of young children with autism spectrum disorder or intellectual disability experience low levels of satisfaction with the diagnostic evaluation process. This study sought to document parents' satisfaction with the services of a pilot clinic implemented in Québec, Canada. METHOD: Two-hundred fifty-nine (259) parents were recruited following their child's diagnosis. A mixed methods approach was used to investigate parents' satisfaction globally and with specific aspects of the assessment process. RESULTS: Parents expressed overall high satisfaction with the assessment process. Parental satisfaction with specific aspects of the assessment process was negatively related to paternal stress, fathers' unemployment and household income and positively related to maternal stress. CONCLUSIONS: This pilot clinic could meet parents' needs at this crucial moment in their care and services trajectory. The factors associated with satisfaction in the present study may inform future improvements to its services.

Attitudes Toward People With Intellectual Disability Associated With Integrated Sport Participation.

Direct, meaningful contact with people with intellectual disability, such as through integrated sport, may be related to positive attitudes. The current study aimed to compare implicit (unconscious) and explicit (conscious) attitudes between adults involved in integrated sport events and those in a comparison group who were not and examine the association between attitudes and degree of integrated sport involvement. An online survey measuring attitudes was completed by 295 adults without intellectual disability who participated in integrated sport activities and 450 adults who did not. Individuals involved in integrated sport reported less negative behavioral and affective attitudes relative to the comparison group, with mixed results for cognitive attitudes. Groups did not differ on implicit attitudes. Greater integrated sport involvement was related to some aspects of explicit attitudes. Involvement in integrated sport may be linked to how participants view intellectual disability, which has important implications for enhancing social inclusion and informing positive attitudes.

Factors affecting residential staff's role in supporting the sexuality of adults with intellectual disabilities.

BACKGROUND: For adults with intellectual disabilities living in a residential care facility, support staff, who are an integral part of their daily lives, can play an important role in supporting their sexuality. Even though multiple programmes exist, barriers remain when it comes to their application. This study aimed to identify factors affecting residential staff's perception of their role in supporting the sexuality of adults with intellectual disabilities living in a residential care facility as well as facilitators and barriers to that support. METHOD: Semi-structured interviews were conducted with 12 support staff. RESULTS: A thematic analysis revealed four factors, namely support staff's role, facilitators and barriers, sexuality of residents with intellectual disabilities and policies and regulations. CONCLUSION: Results illustrate the importance of expanding support staff's knowledge, clarifying procedures for implementing the support staff's role and establishing a clear practise framework.

Symptom Severity, Internalized and Externalized Behavioral and Emotional Problems: Links with Parenting Stress in Mothers of Children Recently Diagnosed with Autism.

The present study examined which aspects of the child's behavior and clinical profile accounted for three dimensions of parenting stress: related to parenting roles, to interactions with the child, and to the child. Measures of adaptive behavior, intellectual functioning, autism symptom severity, and challenging behavior and emotional difficulties were examined as predictors of parenting stress in 157 mothers of children recently diagnosed with autism. Children's emotional problems and aggressive behavior were most predictive of parenting distress, whereas autism symptoms along with emotional problems and aggressive behavior, respectively, were linked to stress pertaining to interactions and to the child. These findings underscore the need for comprehensive and complementary interventions that focus on children's behavior and symptoms but also on parent adjustment.

[Three approaches to doctor-patient communication and prevention : Which model for which situation ?] / Trois approches de communication médecin-patient et prévention : quel modèle pour quelle situation ?

Doctors learn different communication approaches for use during prevention consultations to promote healthy habits, so as to set up a partnership and to promote patient autonomy. Three of these approaches are shared decision making, when there is more than one reasonable choice, motivational interviewing, principally for behaviour change and therapeutic education, a pedagogical approach helping patients develop skills so that they may have a better management of their chronic illness. This article presents an overview of the commonalities and the differences between these approaches, often considered separately, nevertheless they are complementary and in practice, using elements of all three during a consultation could improve preventative care.

Les médecins apprennent différentes approches de communication utilisées lors des consultations de prévention afin de promouvoir des comportements sains, créer un partenariat avec le patient et favoriser son autonomie. Trois des approches les plus courantes sont : la décision partagée lorsqu'il y a plus d'un choix raisonnable, l'entretien motivationnel pour le changement de comportement et l'éducation thérapeutique, une approche pédagogique visant le développement de compétence des patients pour une gestion optimale des maladies chroniques. Nous présentons ici une vision d'ensemble des similarités et des différences entre ces approches, car, souvent considérées en silos, elles sont néanmoins complémentaires et, en pratique, utiliser des éléments tirés des trois durant une consultation pourrait améliorer la prise en charge.

The diagnostic trajectory in autism and intellectual disability in Quebec: pathways and parents' perspective.

BACKGROUND: This paper aimed to describe the diagnostic service trajectory of families of children with autism or intellectual disability in the province of Québec and identify predictors of parents' perceptions of its quality. METHODS: The Evaluation of the services Trajectory in Autism by Parents instrument was completed by 259 parents at an assessment clinic. Children's clinical records were also examined. RESULTS: On average 26 months elapsed between their first concerns and their child's diagnosis, a period during which few (25%) received support. Parents' evaluations were generally positive but were lower for the accessibility of the pre-assessment phase and the flexibility of the assessment process. Longer delays and a greater number of professionals consulted were associated with lower quality ratings. Some language-, immigration status-, and income-related differences in families' appraisals were noted. CONCLUSION: The diagnostic trajectory for neurodevelopmental disorders within public services in Québec presents some efficiency and accessibility challenges. Possible improvements are proposed to facilitate screening and to support families throughout this phase of their trajectory.

[Stroke patient education: scientific evidence, practical application]. / L'éducation thérapeutique du patient cérébrovasculaire : évidence scientifique, application pratique.

Stroke patient education: scientific evidence, practical application Abstract. Stroke is a sudden and brutal event that changes every aspect of daily life. The patient and his family will need to develop skills in self-management of this chronic disease over the long term, managing risk factors, lifestyle changes and consequences of stroke. In recent years, randomized clinical trials have demonstrated the effectiveness of patient education and of several lifestyle-changing interventions adopted after a stroke. We summarize this scientific knowledge and describe the practical aspects of implementing a patient education program in a stroke unit, an essential approach in the treatment and follow-up of stroke patients.

Résumé. L'Accident vasculaire cérébral (AVC) est un évènement soudain et brutal qui bouleverse tous les aspects de la vie quotidienne. Le patient et les proches devront développer des compétences d'autogestion de cette maladie chronique sur le long terme, en gérant les facteurs de risque, la modification du style de vie et les conséquences. Ces dernières années, des études randomisées ont démontré l'efficacité de l'Education thérapeutique du patient (ETP) et de plusieurs interventions modifiant le style de vie après un AVC. Nous résumons ces connaissances scientifiques et décrivons les aspects pratiques de la mise en œuvre d'un programme d'ETP dans une unité cérébrovasculaire, une démarche indispensable dans le traitement et le suivi des patients cérébrovasculaires.

Using Prevent Teach Reinforce for Young Children to Manage Challenging Behaviors in Public Specialized Early Intervention Services for Autism.

This proof-of-concept study assessed the feasibility of implementing Prevent-Teach-Reinforce-for-Young-Children (PTR-YC) program to address challenging behaviors in children with autism within the context of public, specialized early intensive behavioral intervention (EIBI) services offered in community settings. Following a 2-day training and with brief weekly supervision meetings, children's EIBI educators acted as facilitators in 35 families' home environments. Small and moderate effect sizes were observed for children's behavioral outcomes and parenting stress. Recruitment and retention rates, implementation fidelity, as well as treatment acceptability from the perspective of participating parents and the organization attested to the feasibility and relevance of implementing and evaluating this program on a larger scale as part of a multi-center randomized controlled trial.

Development of a questionnaire to assess the quality of service trajectories in autism spectrum disorder from families' perspective.

BACKGROUND: ETAP-1 was created to evaluate the quality of services trajectory from families' perspective. The items of ETAP-1 were developed from previous studies on integrated care, existing quality assessments, and consultations with families and experts in evaluation and in autism spectrum disorder (ASD). METHOD: The questionnaire was completed by 200 parents of children aged 5 and under who were recently diagnosed with ASD or intellectual disability. Of these, 183 received diagnostic evaluation through a clinic specialized in ASD; the other 17 underwent diagnostic evaluation in hospital settings. RESULTS: Factor analysis supported the a priori dimensions of quality and distinctions between experiences before and during diagnostic evaluation. The instrument had high internal consistency, convergent and discriminant validity with other measures and was sensitive to differences in service delivery models. DISCUSSION: ETAP-1 is useful in organizing information on families' experiences throughout their services trajectories and according to a dynamic perspective.

Healthcare services utilization among people with intellectual disability and comparison with the general population.

BACKGROUND: Studies have reported unmet health needs in individuals with intellectual disability (ID). This study illustrated and analysed patterns of healthcare services utilization among people with intellectual disability and compared their use to that of the general population. METHOD: Participants (N = 791, aged 15-82) were mainly recruited through government-financed agencies specializing in services for people with intellectual disabilities in Québec, Canada. Comparisons were possible by using health administrative data. RESULTS: Some services were more used by people with intellectual disability than the general population (general medicine, psychiatry, PSA blood tests), and others were accessed at significantly lower frequencies (optometry, physiotherapy, Pap tests). Similar rates were found for mammography, dentistry and psychology. Inequities were more salient for individuals who had more severe levels of intellectual disability. CONCLUSIONS: Our findings support that the population with intellectual disability would benefit from policies and practices aimed at enhancing the access to healthcare services.

Acute Toxoplasmosis among Canadian Deer Hunters Associated with Consumption of Undercooked Deer Meat Hunted in the United States.

We conducted a recent investigation in Quebec, Canada, concerning Canadian deer hunters who went to the United States to hunt deer and returned with symptoms of fever, severe headache, myalgia, and articular pain of undetermined etiology. Further investigation identified that a group of 10 hunters from Quebec attended a hunting retreat in Illinois (USA) during November 22-December 4, 2018. Six of the 10 hunters had similar symptoms and illness onset dates. Serologic tests indicated a recent toxoplasmosis infection for all symptomatic hunters, and the risk factor identified was consumption of undercooked deer meat. Among asymptomatic hunters, 2 were already immune to toxoplasmosis, 1 was not immune, and the immune status of 1 remains unknown. Outbreaks of acute toxoplasmosis infection are rare in North America, but physicians should be aware that such outbreaks could become more common.

Differential reinforcement of high rates of behaviour to increase work productivity in adults with intellectual disability.

BACKGROUND: Due to deficits in adaptive and cognitive functioning, productivity may pose challenges for individuals with intellectual disability in the workplace. METHOD: Using a changing-criterion embedded in a multiple baseline across participants design, we examined the effects of differential reinforcement of high rates of behaviour (DRH) on the rate of data entry (i.e., productivity) in four adults with intellectual disability. RESULTS: Although the DRH procedure increased the rate of correct data entry in all four participants, none of the participants achieved the criterion that we set with novice undergraduate students. CONCLUSIONS: Our results indicate that DRH is an effective intervention to increase rate of correct responding in individuals with intellectual disability, but that achieving the same productivity as workers without disability may not always be possible.

The Effects of Hand Massage on Stress and Agitation Among People with Dementia in a Hospital Setting: A Pilot Study.

Agitation in people with dementia is a growing concern as it causes distress for both patients and their nurses and may contribute to relational disorders. Previous studies involving patients with dementia living in long-term care facilities have reported decreased agitation following massage. The objective of this pilot study was to investigate the effect of hand massage on agitation and biological markers of stress in patients with dementia hospitalized in an acute geriatric psychiatry service. In this randomized controlled trial we included 40 agitated patients with dementia with an intervention group and a control group. The study is designed to test the effect of seven hand massages over three continuous weeks on agitation and levels of salivary cortisol (sC) and alpha-amylase (sAA). Compared to the control group, the intervention group exhibited larger increases in sC and sAA at week 1 from before to after the massage, but larger decreases at week 2 and 3, with a significant group effect for sAA at week 2. Agitation scores were not significantly different between the groups but tended to decrease more in the intervention group than the control group. This study provides first encouraging results suggesting that hand massage might have beneficial effects on stress and agitation in hospitalized patients with dementia. It also highlights the challenges associated with conducting such studies with this complex patient population. Further studies are needed to confirm these findings and the benefits of hand massage as part of routine care for patients with dementia.