Exploring the lived experience of patients and families who speak language other than English (LOE) for healthcare: developing a qualitative study

Simple item page
dc.contributor.authorDo, Victor
dc.contributor.authorBuchanan, Francine
dc.contributor.authorGill, Peter
dc.contributor.authorNicholas, David
dc.contributor.authorWahi, Gita
dc.contributor.authorBismilla, Zia
dc.contributor.authorCoffey, Maitreya
dc.contributor.authorZhou, Kim
dc.contributor.authorBayliss, Ann
dc.contributor.authorSelliah, Presanna
dc.contributor.authorSappleton, Karen
dc.contributor.authorMahant, Sanjay
dc.date.accessioned2023-07-16T00:03:18Z
dc.date.available2023-07-16T00:03:18Z
dc.date.issued2023-07-10
dc.date.updated2023-07-16T00:03:18Z
dc.description.abstractAbstract Background Patients who use Languages other than English (LOE) for healthcare communication in an English-dominant region are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in pediatric hospitals. Despite the knowledge that individuals who speak LOE have worse health outcomes, they are often excluded from research studies on the basis of language and there is a paucity of data on ways to address these known disparities. Our work aims to address this gap by generating knowledge to improve health outcomes for children with illness and their families with LEP. Body We describe an approach to developing a study with individuals marginalized due to using LOE for healthcare communication, specifically using semi-structured qualitative interviews. The premise of this study is participatory research—our overall goal with this systematic inquiry is to, in collaboration with patients and families with LOE, set an agenda for creating actionable change to address the health information disparities these patients and families experience. In this paper we describe our overarching study design principles, a collaboration framework in working with different stakeholders and note important considerations for study design and execution. Conclusions We have a significant opportunity to improve our engagement with marginalized populations. We also need to develop approaches to including patients and families with LOE in our research given the health disparities they experience. Further, understanding lived experience is critical to advancing efforts to address these well-known health disparities. Our process to develop a qualitative study protocol can serve as an example for engaging this patient population and can serve as a starting point for other groups who wish to develop similar research in this area. Plain English Summary Providing high-quality care that meets the needs of marginalized and vulnerable populations is important to achieving an equitable, high-quality health care system. Children and families who use a Language other than English (LOE) in English dominant regions for healthcare have worse health outcomes including a significantly increased risk of experiencing adverse events, longer lengths of stay in hospital settings, and receiving more unnecessary tests and investigations. Despite this, these individuals are often excluded from research studies and the field of participatory research has yet to meaningfully involve them. This paper aims to describe an approach to conducting research with a marginalized population of children and families due to using a LOE. We detail protocol development for a qualitative study exploring the lived experiences of patients and families who use a LOE during hospitalization. We aim to share considerations when conducting research within this population of families with LOE. We highlight learning applied from the field of patient-partner and child and family-centred research and note specific considerations for those with LOE. Developing strong partnerships and adopting a common set of research principles and collaborative framework underlies our approach and initial learnings, which we hope spark additional work in this area.
dc.identifier.citationResearch Involvement and Engagement. 2023 Jul 10;9(1):49
dc.identifier.urihttps://doi.org/10.1186/s40900-023-00465-y
dc.identifier.urihttps://hdl.handle.net/1880/116733
dc.identifier.urihttps://dx.doi.org/10.11575/PRISM/41575
dc.language.rfc3066en
dc.rights.holderThe Author(s)
dc.titleExploring the lived experience of patients and families who speak language other than English (LOE) for healthcare: developing a qualitative study
Files
Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
40900_2023_Article_465.pdf
Size:
920.22 KB
Format:
Adobe Portable Document Format
Download
License bundle
Now showing 1 - 1 of 1
No Thumbnail Available
Name:
license.txt
Size:
2.25 KB
Format:
Item-specific license agreed upon to submission
Description:
Download
Collections
Open Access Publications