Researchers at the University of British Columbia are investigating how social and emotional skills (the way in which we are aware of and can manage our own emotions) may predict levels of anxiety and depression in autistic children and youth. Parents/caregivers of children, aged 9-15 who have a medical diagnosis or an educational classification of ASD, will be asked to complete a 17-20 minute online survey. This research will provide rich data to assist schools and communities in understanding and creating environments to support mental health. Participants will have the choice to be entered into a draw to win 1 of 3 $50 gift cards.

The researcher is a University of British Columbia Okanagan Masters of Nursing Student conducting qualitative research with autistic children and their caregivers to explore experiences in rural emergency departments across the interior of British Columbia. The inclusion criteria includes primary caregivers who have accessed a rural emergency department within the last two years with their child aged 7-13 years with a DSM-4 OR DSM-5 diagnosis of autism. Participants must be comfortable speaking English.  Through recorded Zoom interviews that will last approximately 45-60 minutes, the researcher is hoping to establish the barriers and facilitators autistic children and their caregivers are experiencing in accessing care, and use this data to advocate to health authorities for increasing supports and strategies to improve health outcomes for these children. The strategies proposed will be guided by the lived experiences of these families and their voiced needs. These strategies could potentially include education for healthcare staff, including alternate care pathways to ensure the caregiver has a way to communicate individual care needs of their child, and physical supports, such as sensory toolkits. As the researcher is a mother to two autistic children, the desire to engage in this research arose from her own lived experiences of challenges accessing safe and supportive care in the emergency department.

The overall objective of this study is to explore the role and conceptualization of compassion and transition expectations amongst pre-transition youth (i.e., ages 12-17) with childhood-onset disability (cerebral palsy (CP), autism and childhood-onset ABI), their family caregivers and healthcare providers to inform the development of a virtual peer navigation program.

The following specific research objectives will be addressed:

Objective 1: From the perspective of pre-transition youth with CP, autism and childhood-onset ABI, their family caregivers and healthcare providers, to explore (i) how compassionate care is conceptualized and (ii) the expectations of transition from the pediatric rehabilitation to adult rehabilitation and community settings, experiences of transition planning and how this conceptualization of compassion could be integrated into future transition strategies.

Objective 2: To explore how virtual peer navigation can provide compassionate care and facilitate the transition from pediatric to adult rehabilitation and community settings from the perspective of pre-transition youth with CP, autism and childhood-onset ABI, their family caregivers and healthcare providers.

WHAT’S INVOLVED?
– Sharing your experiences and expectations around transitioning to adult health and community programs
– Your perspective on what an ideal virtual peer navigation program would look like
– Discussing what compassionate care means to you

Participate in a virtual 60-minute interview.
You will be compensated for your time.
For more information, contact Eleni Patsakos: [email protected]