Accessing Care Across Cultures: Qualitative Insights Into the Reality of Informal Caregivers From Ethnically Minoritised Groups

Abstract

Introduction: There remains limited research exploring the experiences of informal carers from ethnically minoritised groups, particularly to illustrate perceptions of caring roles and challenges they may face to address unmet needs. While barriers such as language, cultural expectations and discrimination are acknowledged in wider literature, little is known about how these influence caregiving experiences or access to services in practice. This work seeks to better describe the barriers and facilitators impacting carers from ethnically minoritised groups, as well as illustrate possible influences of culture and carer identity affecting this under-researched population. Methods: Throughout June–July 2024, semi-structured interviews were conducted with informal caregivers from ethnically minoritised groups (including: Pakistani, Black African, Indian, Arab, Chinese and Yemeni communities). Interviews were audio-recorded and transcribed verbatim. Reflexive thematic analysis was used to develop themes. Ethical approval was obtained from Newcastle University Research Ethics Committee, ref: 2275/46476). Results: Fourteen carers of a variety of ages and ethnicities participated. Three overarching themes were developed from the data that centred on the following: Defining the role of a carer: people's journeys to becoming carers and links to roles as interpreters. Advocating for inclusive care: to receive accessible and understandable information. The impact of a person's wider community and culture upon their caring responsibility: culture and health are interlinked, and this influences the support that carers may need. Conclusion: Carers from ethnically minoritised groups have faced challenges with linguistic barriers and the paucity of healthcare services that are sensitive to cultural differences. Much of the work to date has focused on ‘formal’ caregivers and paid roles, as well as the experiences of people from ethnic majority groups. This study contributes unique perspectives to the current knowledge base and raises novel, learning points specific to supporting carers from ethnically minoritised groups. Future research could extend the conclusions from this work to specifically explore possible ethnic and cultural nuances in caring experiences. Patient or Public Contribution: An informal carer (David Black) was involved in the design of the study and its materials, and carers from various ethnic minority groups were involved. The NIHR INVOLVE guidelines and recommendations for carer involvement in research were followed. Trial registration: Not applicable.