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Our systematic review found two studies (across three publications) [61, 62, 64] reported findings related to this theme. Four sub-themes were identified which included:
Healthcare professionals believe that the PLWD should be present when discussing continence problems during consultations [64]; however, caregivers expressed mixed opinions [61, 62].
Caregivers, who favour this approach, believe the PLWD would be more likely to cooperate with management strategies because they had been involved in the discussion [61].
Whereas those who opposed this reported that they did not want to upset or make their relative anxious by discussing a problem that the PLWD might not fully understand or be able to control [61].
Carers who were daughters felt the need to be sensitive to their parent’s privacy and feelings, preferring to discuss incontinence in greater depth with their HCPs; however, this finding did not reflect spouses’ views [62].
Some caregivers suggested that HCPs could explain the problem and management options in simple terms when the care recipient was present in the outpatients’ appointments and then speak separately to the caregiver, providing more details [61].
Carers believed that it was the responsibility of HCPs to initiate conversations about incontinence during both initial consultations and follow-up appointments [61]. However, there were differences depending on whether the care recipient was a parent or a spouse.
Caregivers who were daughters or daughters in law would only discuss incontinence with HCPs when it became problematic, whereas husbands tended to communicate their wives’ problems much sooner [62].
In contrast, HCPs thought that conversations about incontinence should be initiated by the caregiver [61]. However, when HCPs did initiate conversations about incontinence, they reported that this was appreciated by the caregiver who was receptive and engaging in discussion around the topic [64].
Within secondary care, not all HCPs saw addressing incontinence as a priority and thought that the topic should be dealt with by the patient’s primary care provider rather than during a specialist secondary care referral [64].
Time was found to be the most common barrier reported by HCPs to discussing incontinence, because discussing incontinence issues can take more time than was typically allocated [64].
Caregivers desired “straight talk” from HCPs about incontinence and its management in relation to PLWD [61]
During outpatient consultations, caregivers rarely used the term incontinence, instead use terms such as ‘having accidents’, leaking, losing control, wetting or messing their pants, having a urine/bowel problem, urgency, being unable to hold it, and not getting there in time [61, 64].
Health care providers also tend to adopt these terms when discussing incontinence with family caregivers or patients [64]. However, once they were made aware of the term incontinence, they were happy to use it [61].
Caregivers and HCPs suggested a number of written information resources that could be provided for the caregivers attending outpatient consultations [61, 62, 64] which included the following: