Suchergebnisse

AbstractBackgroundPeople with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting.MethodThis qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants.ResultsThree themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care.ConclusionsThe themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population.

Despite legislation affirming the rights of people with intellectual disabilities to take equal part in society, marginalization persists. Accessibility needs can impact this group's ability to engage in the digital society and in aspects of daily living, such as employment and socializing. The Digi-ID PLUS study was established with a team of seven people with an intellectual disability. Team members were hired as a diverse group to give insight into their lived experiences in reviewing and validating research findings. Their insights were key to every aspect of Digi-ID PLUS. It has been recognized that user-centered design enhances technology development and accessibility; therefore, the aim of establishing a Citizen Advisory Panel (CAP) in our program design and delivery is to include the critical role of users by experience to review, validate and test our solution to enhance the accessibility of all aspects of the program. Working with Digi-ID PLUS, the CAP spoke of the impact being paid team members had on their lives. Analysis of insights shared indicated that being a part of the team had a positive impact on their self-image confidence and digital skills acquisition CAP members discussed the importance of supporting each other and the value of being paid for their insights.