AbstractBackground: Faecal incontinence is an under-reported but debilitating health problem that affects people of all ages, and particularly older people aged 65 years and above living in care homes, many of whom have comorbidity such as dementia. Prevalence of faecal incontinence is high in the group, but the exact prevalence is unclear. Faecal incontinence can have significant negative impact, including low self-esteem, feeling stigmatised (and leading to social isolation), and sometimes death. In older people, faecal incontinence is not only the consequence of age-related anorectal deficits such as reduced anal sphincter pressure, but also cognitive decline, care home placement, diarrhoea, constipation and/or effects of polypharmacy. However, faecal incontinence remains a taboo subject because people with the condition are too embarrassed to discuss their symptoms with their family or health care workers. Health care workers, on the other hand, do not routinely broach the topic with patients perhaps because of therapeutic nihilistic attitudes (the belief that nothing can be done to help). In a care home, where most residents live with dementia, this nihilism can mean that residents are not assessed to find out why they are incontinent, thus resulting in the routine use of incontinence pads by care staff. Within the care homes, intimate care such as continence care, bathing and dressing of residents is mostly carried out by care assistants (and occasionally by registered nurses). The care home managers often avoid these messier dirty works because care work for the older people involve bodily dysfunctions and discharges such as blood, vomit, urine, faeces, illness, and death. Therefore, the emotional labour of the care homes’ care workers is an important skill that has therapeutic value to both the care staff and the residents experiencing faecal incontinence. The development of a theory-driven, context-dependent intervention to manage FI is needed for this population.
Methods: The overall aim of this thesis was to develop a context-dependent, complex intervention for the management of faecal incontinence in people living with dementia in care homes and test it for feasibility and potential efficacy. Underpinned by realist programme theories situated within the UK Medical Research Council framework for development and feasibility phases of intervention development, three steps of the framework were iteratively followed. A systematic review (PhD Paper 1) identified the burden and correlates of faecal incontinence among older people living in care homes, and potential modifiable risks factors. A Cochrane systematic review of interventions for faecal incontinence in care homes (PhD Paper 2) did not find any intervention that accounted for the care home residents’ characteristics or dementia. Therefore, some previously published realist programme theories were tested with care home stakeholders using realist evaluation approaches to develop an intervention for faecal incontinence that is context dependent. The intervention developed included toileting exercises (scheduled and prompted toileting), physical exercises (mobility and upper arms movement), conservative management (dietary and fluid intake, and review of polypharmacy) and staff education. Lastly, a pre/post feasibility study (nested in multiple case studies) was carried out in 16 care home residents from two care home units, all of whom had faecal incontinence at baseline and had dementia.
Results: Paper 1 included 23 studies and found the medians for reported prevalence of isolated faecal incontinence, double incontinence, and all types of faecal incontinence in care home residents as 3.5% [interquartile range (IQR) = 2.8%], 47.1% (IQR = 32.1%), and 42.8% (IQR = 21.1%), respectively. The Cochrane review (PhD Paper 2) included only four randomised controlled trials and found no clear evidence on what interventions work for this group. Stakeholder consultation was used to refine previous programme theories and then to develop an intervention. During feasibility testing of this intervention, the study was undermined by poor engagement by the care home staff. It was unclear what intervention had been carried out in one of the two units due to very poor documentation by the care staff. There was no overall significant difference in frequency of faecal incontinence episodes among the care home residents between baseline (four weeks prior to the intervention) and the last four weeks at the end of the 8-week intervention (mean and standard deviation (SD) of faecal incontinence episodes over the four weeks: 50.63 and 52. 94 (p=0.77). When the two care home units are compared, there were also no significant changes in the mean (SD) number of faecal incontinence episodes among the residents of Unit-1 and Unit-2 at baseline [52.50 (± 19.54) and 48.75 (± 20.31)], and four weeks to the end of the intervention [53.13 (± 23.33) and 52.75 (± 24.52)] respectively.
Conclusion: Although there were some changes in stool consistency among individual residents, the changes did not result in an overall reduction of faecal incontinence episodes in the participating care home units. In practice, unless regulatory bodies such as the Care Quality Commission include measures to reduce faecal incontinence (and as a safeguarding issue such as falls and pressure areas), or the care staff believe that incontinence among older people living with dementia in care homes can be ameliorated by intervention, the management of faecal incontinence is likely to remain as reactive measures by the care staff. Research in this context needs to be influenced by the care home managers who run the day-to-day activities of the care home, or risk implementation failure.
|Date of Award
|1 Jul 2023
|Christine Norton (Supervisor) & Ruth Harris (Supervisor)