Beyond the Binary: An Intersectional Approach to Digital Health Disparities for Marginalised Women
8 March 2023
Digital health & innovation Health Services Research Health experiences Patient experience Policy & health systems Public engagement & involvement
Digital health disparities disproportionately affect marginalised women, making it challenging for them to access healthcare services. These women may face multiple hurdles such as lack of accessibility to digital technologies, gaps in language and translation support, low health and digital literacy, dismissive attitudes of healthcare providers, and the adverse impact other aspects of social policy have on their health and ability to access care.
Digital health disparities disproportionately affect marginalised women, making it challenging for them to access healthcare services. These women may face multiple hurdles such as lack of accessibility to digital technologies, gaps in language and translation support, low health and digital literacy, dismissive attitudes of healthcare providers, and the adverse impact other aspects of social policy have on their health and ability to access care.
As part of my PhD Study on digital health disparities, I conducted a series of narrative interviews with individuals from marginalised patient populations on their lived experiences of healthcare access and video consulting technologies. One of the interviews I conducted was with Kamala, a 65-year-old Indian woman living in the UK who faces several barriers in accessing healthcare services due to her multiple chronic conditions and limited English proficiency.
“It’s from Maharashtra!” Kamala proudly declares to me as she hands me a small floral teacup, yellowing with age and brimming with chai. It wasn’t long before I started noticing how her eyes would brighten and her tone would rise energetically as she fondly reminisced about her time living in Maharashtra with her husband and two, young boys. She sits down on an orange footstool near the small window and picks up a yellowing leaf that had fallen from her money plant vase from the windowsill.
“In Maharashtra, I had one doctor for many years and he was kind. He would listen to me. He understood my concerns like how the cold affects me differently.” She sighs softly and rubs the dying leaf between her thumb and forefinger. “How long were you living there?” I ask, my eyes wandering over to the windowsill which housed a colourful arrangement of chipped mugs, old spice canisters, and empty juice cartons all overflowing with various assortments of plants and flowers. “15 years”, she stated, “aur meri zindagi ke sabse acche saal thai” (translated from Hindi: and they were the best years of my life).
Kamala lives with her elderly husband and adult son in a cramped and cluttered two-bedroom flat in Ilford. Along with on-going management of diabetes, arthritis and high blood pressure, Kamala recently had gallstone surgery. Intense bouts of stomach pain and vomiting caused her husband to contact the GP and schedule a telephone consultation. As Kamala spoke limited English, her husband spoke to the GP on her behalf. She complained that her husband didn’t do a good job of explaining her condition as her pain was written off initially as a stomach bug. After a few repeated episodes of this issue, the GP scheduled her for a video consultation.
Kamala recalled how she felt stressed for the appointment and could not sleep the night before in apprehension that the GP would dismiss her issues once again. When I asked her about the logistics of the video consultation and if this was also a source of anxiety, she waved me off saying, “oh my son dealt with all that”. She conducted the video consultation from her couch with her son’s laptop perched on the coffee table while her son sat next to her ready to not only translate, but also to advocate. Although her son’s laptop was old and took some time to boot up, they did not run into any major issues during the appointment. Having lived in the UK for 15 years, Kamala understood English reasonably well and was able to communicate her concerns through her son.
When I asked her how she felt about the experience, she summed it up succinctly saying, “it was the better option (compared to an in-person appointment), but I wouldn’t be able to do it on my own”. I prompted her to expand on what made this the better option for her and she elaborated on the fact that if her son was working, he would not be able to take her for an in-person appointment and she would not be able to communicate effectively with the GP without him there. She added that she feels cold going outside of the home and having to go to the GP service would have meant wearing multiple layers of clothing and she did not want to catch a cold on the long walk to the bus stop.
“It’s too cold here”, Kamala sighs and proceeds to go off on a tangent about how the weather in this country has made her illnesses worse. “When I go back to Maharashtra, all my health issues vanish” she says to me, her hand swiping the air and mimicking disappearance. We sit in silence for a few minutes as I slowly sip my chai and Kamala looks down at the yellowing leaf still in her hand. “It was a better life there” she says softly, wrapping her patterned woollen jumper around her more tightly, “my health was better there”.
I ask Kamala to tell me more about her experiences of accessing health services here in the UK and she brushes me off, simply telling me that her sons take care of that for her. At the time, I remember feeling a twinge of annoyance that she was more interested in telling me stories about a past life in Maharashtra rather than her experiences of healthcare in the UK but in hindsight, I realised that these stories gave me more insight into Kamala’s identity and circumstances than any targeted questions I could ask. Reading between the lines and actively listening to her stories, both what she said and didn’t say, painted a more accurate picture about her experiences with health services and video consulting technology than anything else she could have told me.
Kamala lives in the past and the stories she most often told and took most pleasure in telling were those from her time in Maharashtra with her young boys, eagerly recalling weekends spent teaching her boys to ride bicycles in the park, chaperoning school trips to the local heritage sites, and drinking mango lassi at the beach near their home. Essentially, the move from India to England led to a loss of purpose in her life as her children grew up, and this contributed largely to who Kamala is as an individual. This loss of purpose, heightened dependency on others, and limited agency all serve as factors that underlie how she experiences her health, wellbeing and access to healthcare services.
Kamala’s story highlights the experiences of a marginalised woman who faces several health challenges. Despite the language barrier, apprehension around dismissal from healthcare providers, low health and digital literacy, and limited technological resources, Kamala had a positive experience with video consultation technology. This case illustrates the potential benefits of digital health interventions for marginalised women who may face multiple barriers to accessing traditional healthcare services (transportation, translation services, and lack of familial support). However, it also highlights the importance of taking an intersectional lens when addressing digital health disparities to ensure that these interventions are designed to meet the unique needs and challenges of women like Kamala.
Intersectionality is a framework that recognises the interconnected nature of various social identities and experiences, including race, gender, class, sexuality, and others, and how they intersect to create unique experiences of discrimination, oppression, privilege, and resilience. In the context of digital health research, intersectionality is particularly important to consider, as it helps to illuminate the ways in which the experiences of minority women are shaped by a variety of factors.
In a society where marginalised women often face discrimination, dismissal and social exclusion on multiple fronts, including gender, race, ethnicity, religion, disability, and socioeconomic status, it is critical to recognise and address the complex intersectional factors that contribute to health disparities. Digital health interventions have the potential to bridge some of these gaps and provide more accessible and equitable healthcare services. However, a one-size-fits-all approach to digital health interventions can overlook the unique challenges and needs of marginalised women.
I had the opportunity to speak to Kamala’s son, Rahim, shortly after my interview with her.
He felt that alongside her multiple chronic conditions, his mother struggles with depression- though the taboo subject is never spoken about at home- and that she is overly dependent and reliant on himself. He elaborated on this by pointing out that her dependency was not just limited to technology. It extended to all parts of her life – grocery shopping, decisions around healthcare, day to day activities – and ultimately this dependence has led to a loss in decision-making ability and confidence in Kamala. Over time she’s gotten out of the practice of having to do these sorts of things for herself.
“I think it has a lot to do with confidence”, Rahim says to me matter of factly. “Over the years her dependence has gotten worse, and her confidence has dropped”. He goes on to say in a resigned tone, “it’s not that she can’t do these things, it’s that she chooses not to because she has us.”
By applying an intersectional lens, health researchers can identify and address the specific challenges that marginalised women face when accessing healthcare services. For example, in Kamala’s case, her past experiences and current circumstances have contributed to a lack of confidence and over reliance on her family for assistance with healthcare services. She is able to have a positive experience with video consultations with the help of her son but would not be able to access such services on her own. For Kamala, successful future digital health interventions must consider the role of familial support and confidence-building. In the case of other marginalised women, effective solutions for combating digital health disparities may involve addressing language barriers, teaching transferable digital skills, fostering confidence, providing culturally appropriate care, and/or ensuring access to the necessary technology and infrastructure.
Kamala’s story highlights some of the challenges that marginalised women face in accessing healthcare services. In many cases, these challenges can exacerbate existing health disparities and limit access to vital healthcare services. Digital health interventions may have the potential to provide more accessible and equitable healthcare services, but it is crucial to ensure that these interventions are designed to meet the unique needs and challenges of marginalised women. They must be carefully crafted to be both inclusive and empowering, offering new avenues for care and support that were previously unavailable. However, it is also essential to recognise that these solutions are not a silver bullet.
Ultimately, addressing digital health disparities for marginalised women requires an intersectional approach that considers multiple aspects of their lives and experiences. By applying an intersectional lens to digital health interventions, we can pave the way for a more inclusive and just healthcare system, where marginalised women have access to the care and resources they need to thrive.