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Young carers perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study

Por: Saragosa · M. · Hahn-Goldberg · S. · Lunsky · Y. · Cameron · J. I. · Caven · I. · Bookey-Bassett · S. · Newman · K. · Okrainec · K.
Objectives

Despite young carers (YCs) providing regular and significant care that exceeds what would normally be associated with an adult caregiver, we need to learn more about their experience interacting with the healthcare system. The primary study aims were to (1) describe YC experiences in interacting with the healthcare system and (2) identify types of support YC recognise as potentially helpful to their caring role.

Design and setting

A mixed-methods qualitative study was conducted between March 2022 and August 2022, comprising two phases of (1) semi-structured interviews and focus groups with YCs living in the community to confirm and expand earlier research findings, and (2) a co-design workshop informed by a generative research approach. We used findings from the interviews and focus groups to inform the brainstorming process for identifying potential solutions.

Results

Eight YCs completed either a focus group or an interview, and four continued the study and participated in the co-design activity with 12 participants. Phase 1 resulted in three overarching themes: (1) navigating the YC role within the healthcare system; (2) being kept out of the loop; and (3) normalising the transition into caregiving. Phase 2 identified two categories: (1) YC-focused supports and (2) raising awareness and building capacity in the healthcare system.

Conclusion

Study findings revealed the critical role that YCs play when supporting their families during pivotal interactions in the healthcare system. Like their older caregiver counterparts, YCs struggle to navigate, coordinate and advocate for their family members while juggling their needs as they transition from adolescence to adulthood. This study provides important preliminary insights into YCs encountering professionals, which can be used to design and implement national support structures.

Care, lead, and inspire: Infusing innovation into nursing research and evidence‐based practice course

Abstract

Background

Today's nursing workforce is expected to know how to identify and understand research methods and procedures and apply the most current evidence into daily practice. However, teaching evidence-based practice (EBP) in an undergraduate nursing curriculum poses unique challenges in overcoming students' perception of content relevancy to their educational experience, but also offers opportunities for innovation to facilitate critical thinking and clinical application.

Aims

The aim of this article is to report on how teaching and learning innovation was infused into a research and evidence-based practice course and the effect on students' perceptions of course values and effectiveness.

Methods

We used a Plan-Do-Study-Act approach to introduce innovation in an undergraduate course within a university setting. Final student course evaluations were used to measure outcomes on a 5-point Likert scale (1 = low and 5 = high) on the following dimensions: (1) value of overall educational experience, (2) relevancy of course content, (3) improvement in critical thinking, and (4) level of student-instructor interaction.

Results

Overall course evaluation scores improved greatly from 2.69 to 3.90 between Spring 2020 and Fall 2021. This finding remained relatively consistent across subsequent semesters (3.79 [Spring 2022], 3.84 [Fall 2022]). Students also reported appreciation and increased engagement and interest with the material after transitioning from examinations to a project-based assignment that allowed them to walk through the steps of EBP in class.

Linking Evidence to Action

We identified and implemented several innovative strategies to improve student outcomes and increase the relevance of the course content. These innovations can be easily incorporated at other universities to enhance delivery and student engagement in this content that is essential to advancing quality care in nursing and developing future nurse scientists and practice leaders who care, lead, and inspire.

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