*Dr Neha Sharma(1), Dr Manisha Patel(1), Bhavna Patel(2)
(1) Aarogyam UK CIC, Leicester, England, United Kingdom. (2) Fibro-Focus CIC, Leicester, England, United Kingdom. *Correspondence: aarogyamcommunity@gmail.com
Abstract
This present narrative analysis explores the healthcare experiences of South Asian British women with fibromyalgia through qualitative observations from support group discussions. Our findings highlight significant challenges these women face, including feelings of dismissal and invalidation, inadequate holistic support, lack of clear information, cultural barriers, stigma around mental health, and perceptions of diagnostic assumptions. These experiences underscore the need for culturally competent healthcare practices to improve patient outcomes and satisfaction.
Introduction
South Asian British women represent a significant and growing minority group in the UK, often facing unique challenges within the healthcare system. Previous studies have indicated that cultural and linguistic barriers, as well as the stigma surrounding specific health conditions, can adversely affect healthcare interactions and outcomes for individuals.1 To further investigate these encounters, with a specific focus on women managing fibromyalgia, a chronic condition that is often misunderstood and overlooked, present community-based support groups were observed.
Methods:
The approach involved the facilitation of virtual discussions by a community group with 12 South Asian British women who have been diagnosed with fibromyalgia. These discussions followed a semi-structured framework, allowing the participants to openly share their encounters and perspectives. The data collected was subjected to thematic analysis to pinpoint recurring themes and valuable insights.
Findings:
Dismissal and Invalidation
The outcomes revealed a prevalent theme of Dismissal and Invalidation, with a notable number of participants highlighting instances where healthcare providers routinely disregarded their symptoms. The participants expressed a sense of frustration and invalidation due to the perceived lack of seriousness towards their pain and other symptoms. This aligns with findings from broader studies on the experiences of minority women in healthcare settings.2 “Every time I visit the doctor, they seem to think I am exaggerating my pain. It’s as if they don’t believe fibromyalgia is real” (P-3). “My GP dismissed my concerns, suggesting that my pain was just in my head and advising me to focus on stress management instead of addressing my symptoms. She consistently avoided listening to me” (P-5).
Inadequate support
Inadequate Holistic Support While pain relief was commonly addressed, participants highlighted a lack of comprehensive care that included mental health support, physical therapy, and lifestyle management. This fragmented approach to care often left them feeling unsupported in managing their condition, reflecting broader issues noted in literature on chronic illness management. 3 “I get painkillers, but no one talks about my health or how I can manage my daily life better”(P-2). “I went to my GP with persistent, severe pain, and he suggested that I might have fibromyalgia. That’s all. He didn’t provide any information on how to manage my pain better or mention any available treatments or support” (P-8).
Lack of Information
Lack of Information and Guidance Participants expressed a significant gap in receiving clear, culturally sensitive information about their condition and treatment options. This lack of guidance contributed to feelings of uncertainty and helplessness. “I was given a diagnosis, but no one explained what it really meant or what I should do next. I felt lost” (P-11).
“My physical health declined due to the lack of timely medical intervention, leading to anxiety and deep depression. I received no guidance on effective strategies for managing symptoms, only referrals to pain management, which involved long waits and came too late. I felt unsupported in finding ways to cope with fibromyalgia alongside other chronic conditions” (P-9).
Cultural and Communication Barriers
Cultural and language differences further complicated interactions with healthcare providers. Misunderstandings and communication barriers were common, often resulting in suboptimal care. The outcomes shown are consistent with prior studies that underscore the significance of cultural and religious beliefs in shaping individuals’ views on health and their actions in seeking healthcare.4 “During a recent hospital stay, I felt invisible. The nurse rarely made eye contact or took the time to explain what was happening. I had so many questions, but it seemed like everyone was too busy to listen. Then on point black, she said, there is nothing we could do” (P-10). “There are times when I just can’t grasp the medical terms being used, and it feels like the healthcare professionals don’t make an effort to explain things in simpler language. This leaves me feeling confused and isolated, adding to my frustration”(P-1).
Stigma of Mental Health
Stigma present within the South Asian population impedes individuals from accessing prompt help for mental health worries, exacerbated by the unsupportive behavior of healthcare professionals. As a result, the identification and management of fibromyalgia and connected mental health disorders are frequently delayed, emphasizing the crucial need for culturally sensitive mental health care. The taboo surrounding mental health in our community perpetuates feelings of helplessness when healthcare providers disregard our pain, leaving individuals feeling abandoned. 5 “It’s heartbreaking to feel like I have to prove my suffering is legitimate, especially when I’m already dealing with so much physical and emotional pain”(P-4). “One appointment stands out in my memory. I was trying to explain the constant, debilitating pain and brain fogs, and the doctor seemed more focused on finding a physical cause that fits into a neat box rather than understanding the complexity of fibromyalgia”(P-6). “The unrelenting pain and lack of answers caused depression, and frequent GP visits only resulted in new medications for symptoms, not addressing the underlying cause, which aggravated my other chronic conditions” (P-3).
Diagnostic Delays
Diagnostic processes are often marred by presumptions rather than comprehensive assessments, resulting in prolonged delays in receiving adequate care. Patients frequently navigate a disjointed healthcare system with shifting responsibilities among professionals, leading to a prevailing sense of futility in finding effective solutions. “I’ve been bounced from specialist to specialist, each one conducting their own set of tests, only to come up empty-handed. It’s a never-ending cycle that leaves me feeling exhausted and hopeless”(P-12). “For years, I’ve been living with constant pain and fatigue, with no clear explanation. Each doctor’s visit is an emotional roller-coaster. I walk in hopeful that maybe this time I’ll get some answers, but I often leave feeling even more confused and frustrated than before”(P-2). “From my first GP visit to the final fibromyalgia diagnosis, there were significant delays. Important symptoms were dismissed or overlooked, prolonging my suffering. The delayed diagnosis led to unnecessary surgeries that might have been avoided if the underlying condition had been addressed earlier, causing further health issues” (P-11).
Lifestyle challenges
Lifestyle challenges play a significant role in the lived experiences of fibromyalgia patients, often exacerbating symptoms and complicating disease management. Chronic pain and fatigue inherent to fibromyalgia make maintaining a regular exercise routine particularly challenging. This creates a vicious cycle where decreased physical activity due to pain and fatigue further deteriorates overall health and exacerbates fibromyalgia symptoms. Patients frequently find themselves unable to engage in physical activities that could potentially alleviate some of their pain and improve their physical condition, leading to a progressive decline in their physical and mental health. “When my doctor said, ‘Just exercise more, and you’ll feel better.’ It felt like a slap in the face because they didn’t understand how even a short walk can leave me in bed for days. Their comment made me feel like my pain wasn’t real or important” (P-1). “A doctor once told me, ‘You need to get out more and socialize; it will take your mind off the pain.’ They didn’t realize that my social life has dwindled not because I don’t want to go out, but because I physically can’t keep up. Their words made me feel guilty for something I have no control over” (P-4).
Discussion:
The qualitative statements from fibromyalgia patients underscore the profound impact of communication barriers and lifestyle challenges on their healthcare experiences. Despite these challenges, many individuals derive comfort and assistance from peer groups and community networks, which play a vital role in aiding them in managing their conditions and navigating the healthcare landscape. For numerous participants, these support systems offer a level of understanding and solidarity that is often lacking in professional healthcare settings.
Our observations underscore significant deficiencies in the healthcare encounters of South Asian British women grappling with fibromyalgia. Issues such as symptom dismissal, inadequate support, information gaps, cultural and linguistic barriers, mental health stigma, and perceptions of diagnostic assumptions demand urgent attention. Enhancing provider-patient communication, validating patient experiences, and offering tailored, holistic care plans are essential steps in addressing these challenges. By improving the understanding of fibromyalgia within the medical community and broader society, and by implementing effective, culturally appropriate healthcare strategies, we can significantly improve the quality of life for fibromyalgia patients.
Healthcare systems must prioritize training in cultural competency and the integration of traditional and conventional medical practices. Additionally, reducing barriers to access, ensuring continuity of care, and providing comprehensive support for lifestyle management are critical to better support fibromyalgia patients. Through these measures, we can bridge the gap between patient needs and the care provided, fostering a more compassionate and effective approach to fibromyalgia management.
Conclusion:
This study underscores the importance of culturally competent healthcare practices in improving the experiences and outcomes of South Asian British women with fibromyalgia. By addressing the identified challenges, healthcare providers can better serve this population, enhancing their overall well-being and satisfaction with care.
References:
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How to Cite This Article:
Sharma N, Patel M, Patel B. (2024, July 12). Lived Experiences of South Asian British Women in Healthcare: Insight From Community-Based Support Group. Convergence Insight. Retrieved from https://www.convergenceinsights.co.uk/post/lived-experiences-of-south-asian-british-women-in-healthcare-insight-from-community-support-group
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