Written by Upanish Oli, Research Assistant on the Frailty & Ethnicity project.
I began my role as a research assistant in this qualitative study which explores the lived experiences of older people in Leicester, specifically examining frailty across different ethnic backgrounds. I wanted this role to enhance my knowledge of qualitative research and be acquainted with the social structure and health system of the area. However, the journey through this research not only enriched my understanding of frailty but also unveiled numerous stories that reflect the rich cultural diversity of this city.
Frailty is typically assessed in almost all older patients coming to the hospital, as individuals with different levels of frailty have varying care needs. Engaging in this social science-based research provided a different perspective compared to the more condition-focused conversations we often have with patients. However, this experience has equipped me with valuable skills to communicate more effectively with patients.
Building Connections
Once I joined the research team, I recognised the importance of building rapport with participants. People can feel hesitant to share personal experiences with strangers, but attending social clubs, places of worship, or visiting participants’ homes as a team helped alleviate this barrier. I got an opportunity to do a module on Interview which also helped me ask the correct questions to the participants. My understanding of the Hindi language also facilitated interviews with some South Asian participants. Once we discussed the aim of the study, many individuals readily volunteered to participate. There was one participant who expressed that a lack of understanding of frailty had caused significant difficulties while caring for their partner, motivating them to join the research.
This research project involved up to three interviews with each participant, helped build familiarity which fostered a sense of comfort, allowing participants to express themselves more freely.
Several individuals used this opportunity to share deep feelings and sorrows that they might not have otherwise disclosed. Participants expressed their happiness during our conversations and showed a willingness to meet with us again.
Photovoice
Photovoice was an engaging method for encouraging participants to share their stories. Participants were given a camera to take pictures and later asked to elaborate on what those images meant to them. I felt this approach allowed for better expression and helped participants recall significant moments. The stories that followed each picture were also fascinating to hear. Some photographs conveyed deep meanings too; for instance, one participant shared a picture of a leafy plant, drawing a comparison between its young leaves, mature leaves, and brown leaves to the stages of life. The only downside I observed was that some participants struggled to use the camera, either due to physical limitations or unfamiliarity with the device.
Insights from Diverse Backgrounds
During interviews with participants from various backgrounds, I quickly discovered that each conversation offered a unique perspective on frailty. When discussing healthcare systems, responses ranged from appreciation to accounts of neglect and harm even by doctors. Some common themes the participants voiced were frustrations about feeling unheard which even led to delayed diagnoses in some cases.
The study encompassed multiple ethnicities so discussions about racism were bound to be there. While some immigrants felt they were free from direct racism, others expressed strong discontent with all forms of racism they had faced. Participants suggested that racism should be identified and addressed or that individuals should develop themselves in ways that neutralise inequality.
Sources of Support
1. Faith was a significant source of support mentioned by most participants.
2. Change in Mentality: Participants spoke about the importance of accepting aging and adjusting activities according to their limitations. For example, if one cannot exercise due to knee problems, moderate walking is preferable to doing nothing.
3. Family Members: Some individuals preferred living independently and, on their terms, rather than with their children. However, there was a common notion that as people age, they should allow their children to care for them and accept whatever form of assistance they wish to provide.
4. Keeping Active: Engaging in activities like going out, socialising, and traveling helps combat isolation, which plays a role in frailty.
Reflections and Future Directions
Conducting this research has been an enlightening experience. It has reinforced my belief that frailty is not merely a medical condition, but a multifaceted experience. It has also provided me with an invaluable skills in patient communication that will be beneficial in my clinical practice.
I can’t wait to see this research contribute to the development of a culturally competent frailty assessment tool, which is one of its main aims. This tool will help ensure that older patients receive equitable healthcare.