Motives and Motivations for Peer Mentors of Caregivers with Children who have Fetal Alcohol Spectrum Disorder
Lydia N. Murray, Kimberley E. Harris and Jason Brown Fetal alcohol spectrum disorder (FASD) refers to a spectrum of neurodevelopmental conditions that significantly impact an individual’s physical appearance, learning, and behaviour. A consistent caregiver and home life are known to reduce the occurrence or severity of adverse outcomes. Peer mentors can be important sources of support to caregivers with children who have FASD. The purpose of this study was to identify the motives1 and motivations2 of peer mentors to caregivers of children and youth with FASD. Ten mentors with lived experience raising a dependent with FASD participated in in-person or telephone interviews that included the focal question: “Why do you want to be a peer mentor?” Responses were analyzed with a qualitative content analysis procedure. Four themes were generated from the responses. Mentors wanted to provide emotional support as a means of improving mentee wellbeing through therapeutic means and relationship development. They wanted to share lived experience as a means of educating mentees through the provision of personal knowledge, strategies, and skills. Mentors also chose to become involved for personal or mutual benefit, including fulfilling a call to give back or for personal growth and development. Finally, mentors participated to alter the perceptions and expectations held by mentees regarding caring for a child with FASD by sharing personal values and opinion statements. The themes were compared and contrasted with existing literature.
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Early Learning Rate as a Predictor of Outcome in an EIBI Program
Maria Pongoski, Geneviève Roy-Wsiaki and C.T. Yu The current study sought to examine the predictive value of early learning rate on 1-year outcome measures for autism severity, adaptive behaviour, and intelligence quotient (IQ), as well as the predictive value of intake scores on early learning rate, for children with autism spectrum disorder in an early intensive behavioural intervention program. Using archived data, participants were assigned to one of two groups based on their early learning rate, either the Rapid Learners group or the Less Rapid Learners group, and descriptive analyses were assessed for outcome measures. Results indicated that scores were significantly different between groups at Year 1 for scores on adaptive behaviour and autism severity. As well, a simple linear regression was used to assess the predictability of early learning rate on Year 1 outcome measures and the predictability of Intake scores on early learning rate for the total sample. Results indicated that early learning rate only significantly predicted adaptive behaviour and autism severity scores at Year 1 and only adaptive behaviour Intake scores significantly predicted early learning rate. As a limitation of this study was the use of archived data, future researchers should consider acquiring current skills databases from service providers to better evaluate the variety of skills being taught to each child.
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Socio-Sexual Assessment for Individuals with Intellectual Disabilities: A Twenty- and Forty-Year Comparison
Katya Gessie, Shelley L. Watson, Kelly D. Harding and Yona Lunsky Very little is known about the socio-sexual knowledge and attitudes of adults with intellectual disabilities (ID) and tools to measure these constructs are limited. The purpose of the current study was to compare areas of importance in socio-sexual assessment for individuals with ID with those reported approximately twenty (Griffiths & Lunsky, 2000) and forty (Wish et al., 1980) years ago. A total of 42 professionals in the field, including psychologists, clinicians, and staff members who work with individuals with ID completed a questionnaire where they were asked to rate their perceived importance of topics to be included in socio-sexual assessment for individuals with ID.
Changes in the importance of topics between years are explored and explained in relation to existing literature on issues of sexuality in society, specifically for individuals with ID. In overall ratings, results suggest that some topics remain valued across years such as inappropriate physical contact, intercourse, body parts, and sexually transmitted infections. Certain changes between years appear to reflect a general increase in the acceptance and understanding of the sexuality of individuals with ID. For instance, topics of sexual orientation, birth control, and adult movies/literature appear to be of much greater importance in 2020. Ultimately, the comparison of topics of importance between years provides an up-to-date portrait of the necessary components of socio-sexual assessment for individuals with ID. The implications of this work highlight that an update in assessment can lead to more current understandings of the needs of this population as well as allow for more tailored approaches to sexual education.
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Educators’ Response to Facilitating a Parent-Mediated Intervention for Challenging Behaviour in Children with Autism
Zakaria Mestari, Mélina Rivard, Catherine Mello, Diane Morin and Jacques Forget The challenging behaviours (CB) often displayed by children with autism spectrum disorder (ASD) can have a negative impact on educators who work with them, such as increased levels of stress, emotional fatigue, and frequent occupational injuries. Educators have expressed a clear need for training and supervision to manage CB as part of a program. This study was part of a larger project that aims to assess the implementation of the Prevent-Teach-Reinforce for Young Children (PTR-YC) with specialized educators as facilitators. It examined the effects of training, supervision, and implementation of the program on educators’ well-being and perception of CB. Over the course of 12 weeks, educators were trained and supervised remotely in facilitating the PTR-YC among parents. Data on educators’ burnout symptoms, emotional reactions, and beliefs regarding CB were collected before and after implementation; social validity was assessed at the end of implementation. Educators displayed a significant decrease in negative emotional responses and a significant increase in positive emotional responses to CB. Participants indicated that the program had good social validity, mainly regarding its appropriateness for children’s difficulties and their own willingness to implement it again.
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“What’s going to happen to him when we’re gone?”: Uncertainties of mothers of adult children with autism spectrum disorder and intellectual disability
Nadine Minott, Kelly Carr-Kirby, Kirsten Penrose, Chad A. Sutherland, Nadia R. Azar and Sean Horton Given that individuals with autism spectrum disorder (ASD) and intellectual disability (ID) often remain dependent on parental support as they transition into adulthood, this study sought to understand the lived realities of maternal caregivers to adult children with ASD-ID. Ten mothers of adult children with ASD-ID completed semi-structured interviews. Inductive thematic analysis resulted in three themes related to the uncertainties experienced by mothers of adult children with ASD-ID: (1) aging as a caregiver, (2) residence considerations, and (3) importance of permanency planning. Such uncertainties resulted from mothers simultaneously navigating their own aging process and the continued dependency of their child.
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The Process of Transitioning Adults with Intellectual and Developmental Disabilities to Community Living in Manitoba: What Can We Learn from Community Agencies?
Lindsay McCombe, Margherita Cameranesi, Maria Baranowski, Kayla Kostal, Jenna Heschuk and Shahin Shoostari The process of supporting persons with intellectual and developmental disabilities (IDD) to move from an institution to homes in the community is complex. Staff who work in the community homes and provide care post-transition play an important role throughout the process, but limited research has examined the process from their perspective. The purpose of this cross-sectional study was to explore the experiences of community agency staff, who supported adults with IDD with their transition from St.Amant’s Health and Transition Services (Winnipeg, Manitoba) and provide post-transition care in their new homes in the community. Twenty-six community agency staff (i.e., group home managers, coordinators or supervisors, and directors) participated in an online survey that examined three main areas: (a) the selection criteria St.Amant used to identify candidates for community transitions, (b) the process St.Amant used to implement community transitions, and (c) the support community agency staff received from St.Amant throughout the transition process. Overall, survey respondents evaluated the community transitions process positively. Further, community agency staff indicated they were supportive of future community transitions and recommend using the same selection criteria guided by individualized transition plans.
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