Table 2 Opportunities and Challenges encountered in developing a study with patients and families who use LOE
Opportunities/challenges | Approach |
|---|---|
Initial study development and planning | |
 Partnerships with stakeholder groups  Language barriers  Patient and family Engagement in study design  Research ethics protocols | Collaborate with key stakeholder in your institution who oversee patient and family centered care and interpreter services Co-design methods, learn about additional partnership opportunities from these and community stakeholder groups Ensure ongoing dialogue and communication to maximize study success and address research interests and needs of our partners Study team should include patient engagement expert/consultation. Engage local Research Family Advisory Council (RFAC) for feedback during study development Compensate expert patient representative with lived experience to support study development, execution and analysis. We strongly recommend the involvement of patient partners on the study team Consider meeting with local Research Ethics Board (REB) to clarify and develop protocols that protect research participants, align with research ethics principles and are designed to empower recruitment of this traditionally excluded group |
Study execution and logistics | |
 Recruitment procedures  Data collection  Interpreters  Youth involvement | Ensure recruitment done with Interpreters. In-person recruitment by the study team needs to be built on a strong working relationship with the primary clinical team. Multiple methods for identification of potential participants are recommended. Consider most appropriate consent and assent methods Ensure a family-centered data collection process. Be flexible with time and format of interview Consider all potential methods for interpreter deployment during the study process. Balance rigour of interpretation/translation with engagement of different populations Children and youth should be involved in studies as participants when considering pediatric health questions. Work with families to optimize participation. Ensure recruitment, consent and participation process is appropriate for age |