Carers living with stroke survivors who were incontinent had minimal social interaction and felt socially isolated
K R Brittain
Dr K R Brittain, Newcastle University, Newcastle upon Tyne, UK;
What are the social consequences for informal carers who live with stroke survivors who have urinary incontinence?
Purposive sample of 20 carers 51–86 years of age (65% women) who lived in the same house and provided care to stroke survivors with incontinence for 7 months to 18 years without remuneration; most were spouses, partners, or daughters of care recipients (CRs). Carers were recruited from a UK Medical Research Council Incontinence study and a local Family Support Office.
Carers were interviewed for 45–90 minutes on topics including physical role of carer, effect of caring for someone with stroke on life of carer, onset of stroke, health problems related to stroke, urinary incontinence and leakage, and the CR’s family. Interviews were tape recorded (except for 1 written record), transcribed verbatim, coded hierarchically, and analysed for themes.
Strategies for becoming acceptably continent. Many carers used plastic sheets, towels, and pads to control leakage, which made it acceptable for CRs to void in places other than the toilet and enabled them to feel acceptably continent. Other devices, such as a home-made “box rubber” bed covered with layers of sheets and plastic, helped contain leakage. While catheters reduced the need for washing and gave 1 carer the freedom to invite friends to the house, another carer felt that leakage and irritation were problematic. Other carers left CRs with a bottle when they had to leave the house for errands or altered the CR’s clothes to disguise their incontinence. Another carer prompted voiding every hour at night but found that it did not immediately trigger the urge to void and instead led to wetting the bed 10 minutes later. Psychological strategies used by carers (eg, cognitively mapping toilet locations) were important for maintaining the integrity of CRs but reduced social activities and interactions of carers. Inability to maintain continence sometimes led to social isolation for both carers and CRs. Dealing with bodywork and dirty work. Both carers and CRs were embarrassed about the odour and visibility of wet clothes from leakage. Odour was difficult to contain and control and was especially feared and stigmatising because it served as a moral label. This exacerbated social isolation of carers and CRs within their homes. For example, 1 carer felt that nobody visited because of the “stink” of her house. Changing geography of care. Some homes were equipped with appliances for toileting and leakage (eg, raised toilet seats, commodes, beds in living rooms), and this transformed them into “institutional spaces.” This associated CRs with illness, dependence, or disability, and led to further isolation and marginalisation of carers and CRs. For example, many carers did not leave their homes because their CR’s incontinence was better managed at home.
Carers living with stroke survivors who were incontinent had minimal social interaction and felt socially isolated.
Brittain KR, Shaw C. The social consequences of living with and dealing with incontinence—a carers perspective. Soc Sci Med 2007;65:1274–83.
Source of funding: UK National Health Service Research and Development Programme on Cardiovascular Disease and Stroke and Medical Research Council Leicestershire Incontinence Study.
Up to 60% of patients in the acute phase of stroke have urinary incontinence, and one-third remain incontinent at 1 year.1 The study by Brittain and Shaw enabled the carer’s “voice” to be heard by showing what it is like to live with a stroke survivor who has incontinence. Stroke survivors and carers used a range of methods to preserve their psychological and social integrity. Solutions were often improvised, with variable degrees of success. Incontinence was profoundly stigmatising for both carers and CRs. The findings may be transferable to similar individuals and settings (on contextual and theoretical grounds), but the extent to which they reflect the diversity of carers’ views is unclear (eg, carers from minority ethnic groups).
Stroke is considered a family illness,2 yet services often fail to recognise the needs of carers.3 This may lead to significant deterioration in carers’ health and quality of life. By offering practitioners useful insights on the hidden burden of incontinence, the study by Brittain and Shaw highlights the importance of early recognition of needs of carers of stroke survivors. Once recognised, appropriate support can be provided, for which a body of evidence is emerging.3 Structured assessment and management during the acute stroke phase, including specialist nursing, may restore continence in the longer term. Studies that identify effective therapeutic interventions for patients with stroke are needed to guide practice,4 as is evidence on the types of indwelling urinary catheter that are indicated for those requiring them.5