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“I saw my life you could say...” Perspectives of youth with visual impairment about the Y-PEM


Visual impairment includes a range of vision loss from low vision to total blindness. Young people with visual impairment are at risk of social exclusion due to a range of environmental factors impacting their participation. The lack of environmental support is a major obstacle for youth with visual impairments accessing employment opportunities, even when they have the required education and personal skills. It is therefore necessary to assess the impact of the environment on youth’s participation. 


The Youth and young adults Participation and Environment Measure (Y-PEM) is an assessment that links participation with the environment in one tool. It captures a range of activities relevant to youth ages 12-30 across four settings: home, school, community, and work. The applicability and usefulness of this tool had not yet been investigated among young people with visual impairments.  


The ASPIRE lab conducted a study to explore how youth with visual impairments perceive the usefulness of the Y-PEM in capturing their participation and how the information generated from the Y-PEM contributes to understanding their own participation experiences. 


What did we do? 

We invited 11 youth (ages 17-24) with visual impairment from Quebec to complete the Y-PEM and then to participate in an online interview. In the first session, youth met with a member of the research team to complete the Y-PEM (virtually). During this session youth also completed a short questionnaire (QQ-10) asking about their perceived value and burden of completing the Y-PEM. Then, within one week, the team member met the youth again to share their responses and present the results of the Y-PEM. During this second meeting, youth were asked questions about their responses (including facilitators and barriers to participation) and their experience while completing the Y-PEM.  


What did we find? 


Results from the QQ-10 questionnaire indicated that the Y-PEM was appreciated by youth with an average score of 77% on the value-related items and had relatively low burden (19%). During the interviews, youth reported that the Y-PEM was well-structured, organized, comprehensive, and could be used to capture participation patterns, set participation-based goals, and show progress over time. Three main themes were identified demonstrating youths’ thought process when reflecting on their Y-PEM results and making decisions about their participation: 1) insights on participation, that consequently allowed for a 2) reflection on personal attributes, and stimulated 3) approaches to participation. Figure 1 demonstrates the three main themes and related sub-themes. 



Figure 1: Themes and related sub-themes 



Key Quotes:


Theme 1: Insights on participation 


“Sometimes in the community [...], they offer sometimes accommodations like I know from movies they have like closed captioning they will give you like a device with captioning if you're deaf or hard (of) hearing. Um, so they have like large print menus or whatever, but because there's a little bit... stigma associated with that you don't necessarily always want to ask for those things.” (P2, Increased awareness of impact of environment on participation) 


Theme 2: Reflection on personal attributes 


“You still have to be proactive to get involved in the community and then if you don't know [anyone] who is involved with us, [we have to] take the steps [...]. Especially since I know that there will be problems due to my disability and then I have to have the solutions, but it's a lot of effort.” (P1, Effort required to participate) 


Theme 3: Approaches to participation 


"Communicating is the most important […] you can't be living in your own little bubble and expect things to be done or expect things to work out for you” (P5, Building on personal abilities and resources). 



Conclusion:


The Y-PEM and subsequent interview stimulated youth’s reflection on their experiences in new ways by exploring various elements in the environment. The Y-PEM could provide a structured method to address areas that are important for this population but currently often unaccounted for in practice. 






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