The social consequences of living with and dealing with incontinence—A carers perspective
Introduction
A neglected area in both formal and informal care is research into the notion of ‘bodywork’ or ‘dirty work’ (Twigg, 2000). Twigg (2000) argues that bodywork is ambivalent work and verges on areas of taboo in connection with sexuality or human waste. Hughes (1984) phrased the term ‘dirty work’ as part of the process of caring for someone, and in doing so highlights how this type of work transgresses social and personal boundaries within our society. Through a moral division of labour those with higher status are able to leave potentially stigmatising work to others lower in status. Professionals who work more closely with the body employ strategies to manage the associated stigma that working with it can pose (Bolton, 2005; Jervis, 2001). Paid roles which, and professionals who, work with the body are accorded status and higher remuneration by placing a distance between themselves and the body, sometimes through the use of technology (Lawler, 1997; Twigg, 2000). For example, although medicine deals with patients and bodies it does so by constructing them in terms of the object of science and investigation which leads the body to become distant and depersonalised (Lawler, 1997). Roles that work most closely with the body and its waste are seen as low in status (Jervis, 2001).
Although Twigg (2000) primarily looks at the formal setting for care work this concept can also be applied to the informal process of caring. Twigg, drawing on the analyses of disgust in the work of Miller (1997) and Douglas (1966), Douglas (1970), highlights how in our ‘ordered’ society disgust relates to other people; it is other peoples’ dirt that threatens our ordered boundaries. For Douglas (1970) there is no such thing as absolute dirt. Dirt is ‘matter out of place’ and is defined socially and culturally in the eye of the beholder. She points towards the idea that the physical experience of the body is controlled and modified by the social categories through which it is seen. Fluids and seepage violate the boundary of the body as it throws the integrity of the body into question. Bodily decline and decay have always elicited revulsion or disgust but it is seen as particularly problematic in society today (Lawton, 1998). Our desire for self-contained and bounded individuals is threatened by symptoms such as incontinence. For Lawton (1998), incontinent individuals are ‘unbounded’ and, if dying, are hidden in hospices. The hospice in Lawton's analysis acts as the physical container whereby unbounded individuals can exist; their seclusion enables society to maintain ideas about living bodies being hygienic, sanitised and somatically bounded (Lawton, 1998, p. 123).
Disgust arises not only from what we see but also from what we smell. Odours challenge the notion of bounded individuals because, by their very nature, they escape and transgress boundaries (Lawton, 1998; Twigg, 2000). Lawton, in her description of Annie, highlights how the smell emanating from her body meant that she was eventually segregated from other dying patients to a side ward of the hospice. This strategy was employed by staff to try and contain the odours emitted from the body to be ‘contained within a more bounded space’ (Lawton, 1998, p. 133).
Herskovits and Mitteness (1994) argue that incontinence is a symptom that transgresses our industrial age and biomedical values whereby it is an individual's responsibility to achieve mastery and control over their health. The incontinent person in this sense is lacking self-control through loss of control of their bodily functions; this loss is “embarrassingly non-adult”. The management of incontinence is critical for women to maintain their self identity as competent adults (Peake & Manderson, 2003). Herskovits and Mitteness (1994) go on to argue that the failed incontinent body evokes particularly destructive assaults on a person's adult status because there is both symbolic and actual filth that emanates from their body. Filth in this sense is powerful in that it contaminates aging, thus requiring older people as a whole to prove and re-prove their adult status through general and specific strategies. The unboundedness of the body and its leakiness also undermine the identity of that dying body. In contemporary Western culture a person's selfhood and identity are tied up to the ‘possession of a physically bounded body’ (Lawton, 1998, p. 131). Leakiness or unboundedness can lead those individuals to curtail their activities and withdraw from social participation (Grimby, Milsom, Molander, Wiklund, & Ekelund, 1993; Lagro-Janssen, Smits, & van Weel, 1992; Mitteness, 1987a). The ‘loss of physiological autonomy’ is embarrassingly non-adult and can elicit feelings of shame (Eisenhandler, 1992). Furthermore, odours, sights and textures can all disrupt social relationships (Isaksen, 2002).
For many, incontinence is seen as being the last frontier of the social life, the point beyond which it is no longer possible to engage actively and equally in society (Twigg, 2000). Its social and psychological impact on a person's life has been well documented (Brown et al., 1998; Dugan et al., 1998; Fultz & Herzog, 2001; Herzog, Fultz, Brock, Brown, & Diokno, 1988; Johnson et al., 1998; Lagro-Janssen et al., 1992; Seim, Hermstad, & Hunskaar, 1997). The prevalence of depression, anxiety and stress amongst carers living in the community has also been thoroughly researched (Draper, Poulos, Cole, Poulos, & Ehrlich, 1992; Greveson & James, 1991; Jones & Peters, 1992; Wade, Legh-Smith, & Hewer, 1986). The impact that urinary incontinence can have on the emotional health and social life of the carer, however, is a neglected area (Cassells & Watt, 2003; Fultz et al., 2005). Only a few small studies have explored the impact that incontinence can have on the lives of informal carers and these have highlighted the loss of personal time and space available to a carer (Gallagher & Pierce, 2002), how the space of home changes to incorporate the needs of both the carer and incontinent person (Forbat, 2004) and how incontinence and frequent toileting cause sleep deprivation for both (Cassells & Watt, 2003). The aim of this paper is to build on existing literature that highlights the impact of urinary incontinence on a person's life and to explore the notion of the bounded body and dirty work in light of the role of informal carers looking after someone with incontinence. The data presented here are drawn from a study that explored the impact that caring for an incontinent stroke survivor can have on the life of the carer, with a specific focus on the effects of urinary incontinence on this relationship.
Section snippets
Study design
Given the absence of research on the impact that urinary incontinence can have on a carer, a qualitative approach was deemed to be the most appropriate for identifying and conceptualising salient issues (Fitzpatrick & Boulton, 1994). A focused interview technique was used to explore in more depth the care giving role in terms of urinary incontinence (Fielding, 1993). The debate surrounding the methodological rigour of qualitative research is characterised by a lack of consensus concerning the
The sample
Carers were recruited from a Medical Research Council (MRC) Incontinence Study and a locally based Family Support Officer (FSO). The MRC Study aimed to identify the prevalence of urinary storage abnormality symptoms, including incontinence, by carrying out a postal survey of a randomly selected sample of people over the age of 40 years registered with participating GPs. Those who reported urinary symptoms were invited to take part in a more detailed structured interview to identify factors
Strategies for becoming acceptably continent
Previous research has identified a number of behavioural and psychological strategies employed by incontinent elders to manage their urinary leakage (Mitteness (1987a), Mitteness (1987b)). Similarly in this study, carers employed numerous devices in an attempt to control the leakage of urine. The use of plastic sheets during the night was not uncommon amongst this sample of carers.
Well she can’t control her bladder and that, so very often the beds wet and you have to change all that and all her
Conclusion
This study explored in depth the complexity and uniqueness of caring for an incontinent stroke survivor. It also highlighted the ‘bodywork’ and ‘dirty work’ that carers face (Twigg, 2000). Carers in this study, as in other studies, have highlighted how dealing with the leakage of urine and its associated smell can have considerable impact on the daily lives of carers. These include the restriction of out of home activities and the need to manage the environment to ensure that both caregiver and
Acknowledgement
This paper draws on data collected for a project funded by the UK National Health Service Research and Development Programme on Cardiovascular Disease and Stroke in collaboration with the Medical Research Council Leicestershire Incontinence Study. We would like to thank the funders and the Stroke Association for enabling further recruitment of carers via the local Family Support Officer. Furthermore, we would like to thank the carers and stroke survivors who gave up their time to take part in
References (55)
- et al.
The home as a site for long-term care: The meanings and management of bodies and spaces
Health and Place
(2005) - et al.
The impact of own and spouse's urinary incontinence on depressive symptoms
Social Science & Medicine
(2005) - et al.
Transgressions and sickness in old age
Journal of Aging Studies
(1994) Boundary breaches: The body, sex and sexuality after stoma surgery
Social Science & Medicine
(2005)- et al.
The personal significance of home: Habitus and the experience of receiving long-term home care
Sociology of Health and Illness
(2005) Women's work, dirty work: The gynaecology nurse as ‘other’
Gender, Work and Organization
(2005)- et al.
Urge incontinence: The patient's perspective
Journal of Women's Health
(1998) - et al.
The impact of incontinence on older spousal caregivers
Journal of Advanced Nursing
(2003) Purity and Danger: An analysis of the concepts of pollution and taboo
(1966)Natural symbols
(1970)
A comparison of caregivers for elderly stroke and dementia victims
Journal of American Geriatrics Society
The quality of life of older adults with urinary incontinence: Determining generic and condition-specific predictors
Quality of Life Research
The social value of “physiological autonomy”: Urinary incontinence and continence in a sample of older women
Journal of Women and Ageing
Qualitative interviewing
Qualitative methods for assessing health care
Quality in Health, Care
Listening to carers talking about the subjects of continence and toileting
Nursing Times
Self-reported social and emotional impact of urinary incontinence
Journal of the American Geriatrics Society
Caregivers’ and care recipients’ perceptions of dealing with urinary incontinence
Rehabilitation Nursing
The constant comparison methods of qualitative analysis
Social Problems
Awareness of dying
Improving long-term outcome after stroke—The views of patients and carers
Health Trends
The influence of urinary incontinence on the quality of life of elderly women
Age Ageing
Urinary incontinence and psychological distress among older adults
Psychology and Aging
The Sociological Eye
Toward a sociology of (gendered) disgust
Journal of Family Issues
The pollution of incontinence and the dirty work of caregiving in a US nursing home
Medical Anthropology Quarterly
The association of urinary incontinence with poor self-rated health
Journal of American Geriatrics Society
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