Table 5 Overarching synthesis with CERQual and GRADE
Theme 1: Communication that is dignified, person-centred, and respectful | |
Communicating in a dignified way | |
1. PLWD and their carers find talking about incontinence distressing and embarrassing CERQual: moderate/studies 2, 3, 4 2. HCPs to build trust and rapport through using humour, having appropriate knowledge and skills by speaking quietly and keeping incontinence issues secret CERQual: moderate/studies 2, 3, 4 | |
The attitudes of HCPs towards continence and continence care | |
3. HCPs often ignore toileting requests or avoid routine toileting citing being busy or being uncomfortable with or disinterested in toileting CERQual: moderate/studies 2, 14 4. Staff in acute settings do not consistently promote continence CERQual: very low/study 14 5. HCPs having respect building relationships and using appropriate language CERQual: very low/study 2 6. Interpersonal and communication skills are important and should be a focus of education programs [86, 87] (non-research: ungraded) | |
The importance of non-verbal cues | |
7. PLWD are not always able to recognise and communicate that they need to go to the toilet or indicate that they assistance [10, 80, 81, 83] and they use a variety of non-verbal cues [10, 79, 81,82,83, 85, 87] CERQual: high: studies 1, 2, 3, 4, 5, 6, 7, 10, 11, 12 and non-research: ungraded 8. HCPs checking PLWD awareness of communication techniques including non-verbal cues through communicating with the family CERQual: moderate/studies 2, 13 9. HCPs being able to recognise the non-verbal signals, body language, facial expressions, behaviours, and signs that PLWD use to communicate that they need to go toilet is crucial [79,80,81] and this should be a focus education programs for new staff CERQual: moderate/studies 2, 12 and non-research: ungraded | |
Finding the appropriate words and symbols to describe the toilet | |
10. Finding out what words or phrases that PLWD use for describing the toilet is seen as important [79, 81,82,83] CERQual: very low Study 7 and non-research: ungraded 11. People living with moderate dementia preferred the word toilet compared to those with no cognitive impairments and those with advanced dementia preferred the international symbol for toilet compared to those with mild dementia or no cognitive impairment CERQual: very low/study 7 | |
Strategies for improving communication | |
12. HCPs introducing themselves and seeking PLWD approval before performing tasks CERQual: very low/study 4 13. A range of strategies have been identified that include getting to know the PLWD and how they communicate and manage their continence, communicating with the family, prompting, seeing the person has an individual, and checking HCPs communication skills [10, 80,81,82,83] CERQual: moderate/studies 4, 13 and non-research: ungraded | |
Using technology to present instructions | |
14. Verbal instructions, presented automatically through simple technology has the potential to be effective in helping persons with mild or moderate AD go to the toilet independently by presenting simple step wise sequential instructions Grade: very low/studies 5, 6 | |
Theme 2: Communication during outpatient appointments | |
Presence of PLWD during outpatient consultations | |
15. Caregivers felt having the PLWD with them during outpatient consultations could cause unnecessary anxiety CERQual: very low/study 1 16. Caregivers felt having the PLWD with them during outpatient consultations would allow greater cooperation with management strategies CERQual: very low/study 1 17. HCPs felt it was important that PLWD were present at appointments CERQual: very low/study 3 | |
Initiating conversations during outpatient consultations | |
18. Uncertainty over who should initiate conversations during consultations CERQual: very low/study 3 19. HCPs suggested developing a pre-visit checklist to prompt conversation during consultations CERQual: very low/study 3 | |
The language of incontinence during outpatient consultations | |
20. Incontinence and management options are often explained in terms that caregiver find difficult to understand. CERQual: low/studies 1, 3 21. Caregivers and HCPs suggested a variety of written information resources that could be provided CERQual: low/studies 1, 3 | |
Theme 3: Delivering individualised continence care | |
Importance of individualised continence care | |
22. Targeted and individualised/person centred continence care that is established after a thorough assessment has taken place is seen as important [10, 33, 77, 81, 84, 86,87,88] non-research: ungraded 23. Individualised continence care is about what is best for the PLWD and avoiding harm and about promoting autonomy and independent living [10]. non-research: ungraded | |
Components of individualised care planning | |
24. Individualised care planning should consider the needs of both PLWD and their caregivers and involve multi-components exploring both day time and night care of incontinence are helpful in addressing incontinence in the home care setting [10, 33, 77, 84,85,86] non-research: ungraded 25. An intervention that involved individualised and comprehensive care for residents in a care home that focused on providing adequate fluids and meal by encouraging patients to use toilets was effective for 19% of residents in reducing the proportion of diapers used Grade: very low/study 9 26. An intervention that involved individual treatment strategies delivered by an occupational therapist and designed to enhance the caregiver's ability to problem solve about their environment. A post-intervention survey reported that this approach enabled caregivers to develop effective solutions to situations they considered problematic which included toileting CERQual: low/studies 10, 11 27. An intervention that involved training health workers in person centred care was effective in improving the quality of care and a reduction in the number of aids needed to manage incontinence GRADE: very low/study 15 | |
Health care professionals and caregivers working in partnership | |
28. It is important that HCPs and caregivers work together to deliver individualised/person centred continence care [77, 81, 84, 85] non-research: ungraded | |
Establishing a toileting routine within the home environment | |
29. The importance of developing a regular toileting schedule was highlighted by caregivers [10] CerQUAL: very low/study 10/non-research: ungraded 30. An individualised scheduled toileting program that compensated for cognitive impairment by providing memory-impaired patients with toileting reminders was not shown to have any significant benefits in terms of improving the number of incontinent episodes for PLWD in a home care setting Grade: very low/study 8 |