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Research

Experiences of African-Caribbean women of their body after stroke

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How do African-Caribbean women from the East End of London experience their bodies and adjust to life after a stroke? Find out in this article summarising the outcomes of a qualitative research study

Abstract

The human body is more than just organs and tissues: it has a social dimension and is used to make sense of the world, including health and illness. In stroke survivors, physical disability affects the body but also a personal identity. A qualitative study exploring the experience of life after stroke among six older African-Caribbean women shows how these women used the feelings generated by their bodies to make sense of illness, make decisions about their health, and negotiate and adjust to life after stroke. Interpretative phenomenological analysis allowed us to determine collective themes that reflect how illness was embodied in that group.

Citation: Moorley CR, Cahill S (2018) Experiences of African-Caribbean women of their body after stroke. Nursing Times [online]; 114: 5, 52-55.

Authors: Calvin R Moorley is an associate professor in adult nursing, Faculty of Health and Social Care, London South Bank University; Sharon Cahill is head of department for psychological sciences, School of Psychology, University of East London.

Introduction

Stroke, which is reported as the leading cause of disability in the UK (Stroke Association, 2016), can negatively affect the body and identity of survivors. Those of black or Caribbean heritage are at higher risk of having a stroke than other people in the UK (Stroke Association, 2013), so there is a need to explore their experiences and life after stroke. In 2012, we conducted a qualitative study to understand the lived experience of life after stroke of six African-Caribbean women living in the East End of London.

The social body

Our bodies extend beyond their biological and physiological boundaries to encompass a social dimension, as cultural, economic, political and social forces shape how we view and use them (Nicholls and Gibson, 2010). The body is a medium through which we experience health and illness, but also gives social meaning to our conditions. The social meaning gained from a stroke can lead to a disabled identity due to loss of social status and functional ability.

Kvigne and Kirkevold (2003) propose that changes in the body express an index for identity because they are “socially stigmatising and degrading”. Stroke affects the ‘order of the body’ (its ‘normal’ functions, such as walking, speaking or washing) and the ‘order of interaction’ (what is considered by society to be normal), in that these two ‘orders’ can no longer work without drawing attention or stigma (Kvigne and Kirkevold, 2003).

The body draws attention, which leads to stigmatisation (Lupton, 2004). A diseased or traumatised body is often noticed or stigmatised. A person who has had a stroke may have to come to terms with having a body that departs from cultural norms and acceptable gender and social roles (Moorley et al, 2016a; 2016b; Connell, 1983; Goffman, 1968).

The body plays an important role in assigning meaning from our experiences of illness; it guides us on what actions we can still perform and when we need to find alternatives. The body speaks through sensations that are anchored in meaning, derived from our experiences in the social world (Corbin, 2003). It is a key agent through which we construct our health identity and create our own ‘life worlds’ (all the immediate experiences, activities, and contacts that make up our individual world). It is physical, in that it is experienced by others from the outside, and it is also lived, in that we experience it from within.

Study methods and population

Our qualitative study used a phenomenological approach to understand the lived experience of life after stroke among African-Caribbean women living in the East End of London. Ethical approval was granted by the University of East London and the local NHS research committee. The study was advertised in local day centres and community halls frequented by African-Caribbean women, as well as in hospital outpatient clinics and sheltered accommodation.

Participants had to identify as African-Caribbean and female, and have had a stroke at least six months before – this meant that they would have had time to adjust to living with stroke. Six women aged 47-85 years were recruited. A detailed description of participants can be found in Moorley et al (2016a; 2016b).

Semi-structured in-depth interviews were carried out in participants’ homes. The interviews were audio-recorded digitally and transcribed verbatim. Data was systematically analysed using interpretative phenomenological analysis (IPA) (Box 1) in four stages (Box 2). More on our approach to the data analysis can be found in Moorley et al (2016a; 2016b).

Box 1. Interpretative phenomenological analysis: concept

Interpretative phenomenological analysis (IPA) can be described as a variant of phenomenology; its aims are concerned with exploring individuals’ perceptions and experiences (Finlay, 2006). IPA uses a degree of questioning that can be beneficial to the depth of analysis (Smith et al, 2009). In IPA, the focus is not on gathering large quantities of data, but good-quality data that will allow a deeper understanding of participants’ experiences. Recruitment can comprise individual case studies and the researcher should use small sample sizes (Smith and Osborn, 2008).

Box 2. Four stages of data analysis

Data analysis using interpretative phenomenological analysis (IPA) was conducted in four stages:

  • Familiarisation: the researcher read and re-read the transcripts to get close to the data (Osborn and Smith, 2006)
  • Sense making: this involved using the logic of inductive reasoning and was achieved by creating a series of analytical codes
  • Data refinement: IPA allows a participant-defined understanding of the data. This helps refining the data, establishing connections between the preliminary themes and formulating a superordinate theme
  • Producing a coherent narrative: this narrative can be viewed as an interplay between “the interpretative activity of the researcher and the participant’s account of her experience in her own words” (Smith and Osborn, 2004); the narrative reflects both the subjective and the collective experiences of participants

Outcomes

The women’s narratives gave rise to four themes:

  • Sensing: the body’s cues to states of health;
  • Listening to the body;
  • Acting on the body’s cues;
  • Life after stroke: negotiating a new self.

Collectively, these themes reflect how illness is embodied by this group of women and becomes part of their daily lives. They demonstrate how sensations generated by the body are used to negotiate everyday living.

The body’s cues to states of health

Most participants used their body as the informant to their stroke, to diagnose illness and determine when their body becomes limited in its abilities and when it comes under attack.

Margo: “You always know when your blood pressure is high because you always get really bad headaches, and your shoulders, you know, they become very stiff and your neck …”

Jenny’s body provided her with warning signs of her blood pressure increasing.

Jenny: “When the blood pressure [is] high you get this blurriness in your eyes and you feel heavy in the head … If I walk fast I could feel my heart pumping and my breath getting sharp, it is part of the pressure, very blurry, sometimes you [are] reading something and it is hard.”

Lucy’s body spoke to her, indicating when she may need to seek medical attention.

Researcher: “So what makes you think the blood pressure is high?”

Lucy: “Oh me head, I feel as if the whole world [is] on my head, my two legs cannot support the body; the head, the legs, my eyes – everything.”

Part of life after stroke is becoming an expert in knowing your body, your illness and the limitations it brings. Experiences of life after stroke are not fixed but fluid. Based on how she felt, Queenie was able to either perform her activities of daily living or decide that she needs support.

Queenie: “So I might get up today and say I feeling good, so I get myself into the bathroom and do other stuff, comb my hair, but then there is another time when I physically can’t do it and I need help and support to do that.”

Listening to the body

This theme focused on the re-telling of the stroke and on how the women listened to their bodies. Doris’ body was beginning to lose some of its functions, but her daughter could not understand this, so it was up to Doris to listen to her body and respond.

Doris: “And I went by her [Doris’s daughter’s home] and we had dinner and when I get up to go to the bathroom I noticed my left side was very stiff, I was dragging and she said ‘Mummy stop this rubbish what can happen to you in this short space of time?’ […] By the time I get home I call the doctor, and he said I was having a stroke and then he sent me up to the hospital.”

Jenny listened to her body through the physical symptoms she experienced.

Jenny: “So I said all of a sudden I feel my hands, numb, me legs feel heavy so I said that I better go to the hospital; I call for a cab. When I got there I was kinda balancing.”

After her stroke, Doris listened to her body and acted accordingly to the signs of high blood pressure.

Researcher: “What are the signs you get when your blood pressure is high?”

Doris: “My head, I always get this headache, and I put it down to that [hypertension] … I will go and lay down, draw the curtain and lay down and stay in bed.”

Acting on the body’s cues

Acting on their bodies’ cues, the women displayed a representation of their illness. As they engaged with these cues, they began to paint a picture of themselves in their social surroundings. This representation of themselves was first within their homes and then in wider social settings such as community and cultural groups. They had learned to listen to their body and act on its cues to make decisions about their health.

Doris: “I was having this pain, pain round my waist, but I take it as nothing. I went straight back out as I was going by my daughter. I got up and found a belt and put it round my waist. And I went by her and we had dinner and when I get up to go to the bathroom I noticed my left side was very stiff … I just couldn’t move my left side properly, anyway I said to her I am going home … By the time I get home I call the doctor, and he said I was having a stroke …”

The body sends signals to people and they choose how to respond. Doris ignored the initial signs of pain from her body. Then she used her own practice, which could be rooted in past experiences or beliefs, to alleviate the pain. After receiving further signs from her body, she then called a doctor.

Jenny’s body conversed with her to indicate when she needed to rest.

Jenny: “You have to rest yourself. If you […] overwork yourself like going up and down it pushes your blood pressure up so you’ve got to rest. I doesn’t rush me work and finish everything before I rest myself I do something and then I go and rest myself … I lay down and listen to my tape and it help relax my body I do bits by bits.”

The body can also become unreliable after a stroke, as in the case of Lucy, who had lost a level of bodily control with her bladder.

Lucy: “I explained to her [the day centre manager] and I said to her that I am embarrassed because many times if I want to urinate by the time I feel it, it don’t give me no notice, warning. By the time I feel it already [gestures indicating floods of urine passing from body]. I say whether I was ill or not I was never like that so she said ‘Oh there is people who is incontinent coming here’, I said ‘No thanks’.”

Life after stroke: negotiating a new self

The following extracts illustrate the struggle of surrendering an old identity and having to incorporate aspects of a new identity, such as ‘disabled’ or ‘slower woman’.

Queenie: “So you can either sit here and think which one of them is it gonna be or you say you know what I’ve got what I’ve got this is what I’ve got and I am gonna make the most of it and you fight.”

Margo’s contribution to a new self was her own efforts to rehabilitate.

Margo: “I have worked really hard over the last year. I have spent lots and lots of money you know, trying to get private physio, you know, to be able to try and walk again, cause I had a stick for three years and then I joined this class … I used to go there every week, and now its moved to [another location] I have been going there for a year … But if I take my time I’ll be able to do anything you know, most things I use to do before.”

Queenie believed that if you are able to perform, then you can be the person you want to be. In her eyes, dependence does not – or should not – change who you are. For Queenie, claiming her life back is an insurance to regain a degree of health.

Queenie: “If there is anything I would like to say to anybody who has just had a stroke is you got to claim your life back cause I know it really difficult especially when you’re dependent on other people, but you have to try you never can give up on trying to claim your life back and claiming your life back does not mean that you cannot rely on someone to do something for you.”

Discussion

Participants’ narratives weave together the past, present and future, allowing us to better understand what it is like to live with a body that has experienced stroke. Most women described their pre-stroke body as hard-working and strong, which they equated to good health. Their able body, woven into the fabric of their lives, used to allow them to function at a much higher capacity. Now they take more time and do things more slowly. Their bodies are no longer young and agile and have become time-consuming bodies.

Over time, the women appear to have gradually become familiar with, and accustomed to, new lives and bodies. Through accepting and managing their health, they have learned to control their bodies, re-conceiving them as an integral part of ‘being with life after stroke’.

A major aspect of controlling one’s body is to ensure it is reliable, unlike Lucy’s body, which she describes as unreliable and betraying. Her loss of bladder control has led to an untrustworthy body that has made her reject the day centre. Worthy of note here is the lack of person-centred care offered by the day centre manager.

Our findings support those of Corbin (2003) that illness identity construction is derived from a fear of: losing control over the body; being unable to do tasks one was previously; not understanding the body’s language; and not being able to trust the body to act as it should.

The body is a vehicle for thinking, feeling and acting (Kirmayer, 1992). Participants used their bodies as mediums for understanding, assessing and guiding their health and health decisions. The sensations experienced through the body helped them make sense of their health and guided their actions.

There was a cycle in the way the women used their bodies, from the initial stroke to adjusting to, and negotiating, life after stroke. It started with the ability to sense what is happening to the body; then came the ability to listen to the sensations experienced; and then the women developed an ability to act on the body’s cues.

Collectively, the women’s narrative shows that the body is experienced in a social world and illness is experienced socially through the body. Illness is experienced through symptoms (Lupton, 2004) such as headaches, pain at the back of the neck and waist. In making sense of these sensations, the body becomes knowledgeable and the person uses it to interpret how far they can go before acting, which may involve seeking help or using one’s own practices.

The locus of control is an internal control of health based on beliefs and practices (Corcoran, 2013; Ewles and Simnett, 2004). Individuals use personal experiences and beliefs to make sense of their bodily sensations, so there is an internal locus of control – that is, people are responsible for their health and so they will rest, or relax, or seek medical attention. A locus of control exists for this group of women, who made decisions about their health based on the interpretation of sensations and experiences.

Limitations

Interpretative phenomenological analysis allowed a deeper understanding of the lived experience of life after stroke but its qualitative nature limits the generalisability of the findings. The study took place in one area of London and among one racial group, but it can help understand how stroke affects the body and identity of African-Caribbean women, and how culture and gender are inscribed in the body as it is negotiating life after stroke.

Implications for practice

The body is more than the organs and tissues that constitute it. It contributes to a person’s identity and is used as a medium to make sense of the world. When caring for people living with stroke, health professionals need to recognise their patients’ bodies as existing beyond illness and health. Despite the medicalisation of the body, they need to be careful not to miss the connection between individual patients, their phenomenological selves and the social world they inhabit. 

Key points

  • The body extends beyond its physiological boundaries to encompass a social dimension
  • The social meaning gained from a stroke can lead to a disabled identity through loss of social status and functional ability
  • The narratives of six African-Caribbean women on their lives and bodies after stroke shows how the body is a vehicle for thinking, feeling and acting
  • Interpretative phenomenological analysis helps gain in-depth understanding of qualitative data
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Readers' comments (1)

  • What about the experiences of everyone else? Isn't it discriminatory to single out a group of patients? What about those with red dyed hair? Etc?

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