Findings from mixed-methods review and thematic synthesis

This chapter focuses on the mixed-methods systematic review and thematic synthesis. Parts of this chapter have been reproduced with permission from Edwards et al.142 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

Methods

This systematic review uses methods informed by the Evidence for Policy and Practice Information and Co-ordinating Centre (EPPI-Centre).143,144 A scoping exercise in January 2018 was followed by a targeted and in-depth review and synthesis. The protocol has been registered as PROSPERO CRD42018119495.

Scoping exercise

The scoping exercise asked ‘what is known about the management and practices of continence care (i.e. continence care, incontinence care, toileting and catheter care) for PLWD in acute, long-term and community health-care settings and home settings?’ Two databases (MEDLINE and PsycInfo^®) were searched from inception to January 2018 for citations that focused on or contained an element relating to each of the following inclusion criteria:

• PLWD, Alzheimer’s disease or cognitive impairment
• acute, long-term and community health-care and home settings
• urinary or faecal continence/incontinence, or toileting issues
• conservative management or care practices (defined as any continence care practice that does not require medical or surgical intervention, including catheterisation145).

After title and abstract screening, 114 of the 1348 citations retrieved remained. After standard screening processes by two reviewers (DE and JH), 87 papers were included, including studies (n = 40, across 48 publications), discussion/opinion papers (n = 17), reviews (n = 13, across 17 publications), audits (n = 2), guidelines (n = 2) and a documentary analysis (n = 1). Studies or reviews published multiple times were treated as one and, therefore, the final number of included papers was 75.

In keeping with the EPPI-Centre approach, findings were presented to stakeholders to ascertain their views on the priority areas for the second phase of searching. All stakeholders (see Appendix 2), as part of this process, were asked to complete a priority-setting exercise, facilitated by answering the question ‘What do you think are five of the most important ways that continence could be managed for PLWD when they are in hospital?’. Responses were collated, coded and grouped together to generate a list of methods for managing continence in the hospital setting.

Descriptive maps of the findings from the scoping exercise and a summary of the consultation with the stakeholders were presented to the collaborative research/project team of co-applicants. Across both groups, the top two priority areas identified as most salient to informing and improving continence care in the acute setting were (1) ‘communication’ and (2) ‘individualised care planning’. This exercise informed the research question taken forward to the mixed-methods systematic review, that is ‘what is known about the management and practices of continence care in relation to communication and individualised care planning for PLWD in acute, long-term and community health-care settings and home settings?’

Mixed-methods systematic review

Objectives

The review aimed to:

• explore carers’, family members’ and HCPs’ perceptions and experiences of communication and individualised care planning for PLWD with regard to toileting and continence
• identify the communication strategies and the use of individualised care planning employed by carers, family members and HCPs to manage toileting and continence for PLWD.

Eligibility criteria

We used the PICOS (participants, interventions, comparisons, outcomes, study design)/PICO (population, intervention, control/comparison, outcome) framework to guide the inclusion criteria for participants, intervention/phenomenon of interest, comparators, outcome, study design and context (see Appendix 3).

Searching

Eight databases were searched from inception to June 2018 (updated August 2020), including MEDLINE, PsycInfo, EMBASE, Cumulative Index to Nursing and Allied Health Literature, Education Resources Information Center, Applied Social Sciences Index and Abstracts, British Nursing Index and Open Grey (see Appendix 4). Relevant organisational websites were searched for UK policy and guidance, and key journals were hand-searched (see Appendix 5). Reference lists of included studies were scanned, experts contacted and forward citation tracking performed using Web of Science.

Screening

All citations retrieved were imported into EndNote (Clarivate Analytics, Philadelphia, PA, USA) and duplicate references were removed. Two reviewers (DE and JH) conducted all screening processes, with disagreements resolved through discussion with a third reviewer. Multiple articles by the same authors reporting the same study were linked to help inform decisions on which studies to include.

Quality appraisal

Quality appraisal of the research material was conducted by two reviewers, with disagreements resolved through discussion with a third reviewer using the Mixed Methods Appraisal Tool (MMAT), version 2011.146–148 Each study was assigned a score based on the number of criteria met (with 25% representing one criterion met and 100% representing all criteria met). Studies were excluded if they scored < 50% for quality (i.e. a maximum score of two out of four criteria).146 Non-research evidence (e.g. policies and reports) were not subjected to quality appraisal.

Data extraction

Demographic data from the included primary research studies were extracted and entered into a series of electronic tables (see Appendix 6, Tables 4–6, and Appendix 7, Tables 7 and 8). Study findings for the primary research studies for the purposes of this review were all considered to be text labelled as results or findings. All such results were extracted and entered verbatim into Microsoft Word. Data for non-research material were extracted and entered directly into an electronic table (see Appendix 8). All non-research material was available as electronic documents, searched using keywords relevant to the priority areas (e.g. ‘communication’, ‘tailored’ and ‘individual’). These data were then considered to be findings and were extracted and entered verbatim into Microsoft Word. Data extraction was independently checked for accuracy and completeness by a second researcher (DE or JH), with any disagreements noted and resolved by consensus.

Data synthesis

Thematic synthesis was employed to bring together data from both qualitative and quantitative primary research studies and non-research material.149

Assessing the certainty and confidence of the evidence

The confidence of the overarching synthesised findings derived from descriptive quantitative research (that had undergone qualitisation) and qualitative research were assessed using the Confidence in the Evidence from Reviews of Qualitative research (CERQual) approach,150 and the findings from quantitative experimental research were assessed using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach.151

Flow of studies through the review

The database searches yielded a total of 5170 citations after removing duplicates (Figure 1).149

FIGURE 1 Flow of citations through the systematic review. (Figure not reproduced here; see the original article.)

Characteristics of the included studies

The 30 included publications included quantitative research studies, qualitative research studies and non-research material studies and non-research material (Table 1).

The 15 research studies were conducted in seven countries (Table 2). Four publications of non-research material were published outside the UK: one European guideline,87 one international guideline,175 and a framework and model published by the same author from Australia.177,178

The research studies were conducted across a variety of settings (Table 3).

Methodological quality

The methodological quality is reported in Appendix 11.

Thematic synthesis

The findings from the quantitative and qualitative research, and from the included policy and guidance materials, were synthesised separately for each objective

Objective 1

The first objective was to explore carers’, family members’ and HCPs’ perceptions and experiences of communication, and the use of individualised care planning for PLWD with regard to toileting and continence. The objective comprised eight subthemes.

Communicating in a dignified way

The importance of protecting personal and social dignity163,165,166 during continence care was significant, and HCPs reported a belief that PLWD and their caregivers prefer not to talk about incontinence because it is a highly embarrassing165,166 and distressing issue.178 HCPs believed that the provision of quality continence care for PLWD includes measures and approaches that conceal incontinence by creating situations that allow PLWD to go to the toilet in private and avoid communication that reveal their issues around incontinence or care dependence, which could cause them to feel embarrassed, ashamed or humiliated.165

Respecting PLWDs’ right to privacy was also considered important.163,165,178 To relieve PLWDs’ perceived embarrassment of accepting assistance,163,165 HCPs stressed the importance of building rapport and trust, using humour178 and ‘acting natural’163 when supporting continence needs. HCPs also felt that they should have the appropriate knowledge and skills to communicate with PLWD in ways that would minimise any emotional impact.165 Other strategies to enhance privacy included whispering to the client about toileting issues165 and keeping these issues secret.163 However, HCPs acknowledged that PLWD may have difficulties in recognising and communicating their continence needs, and PLWD not being verbally able to request toileting assistance was viewed as a barrier to protecting dignity.165 Closely overlapping with this theme of communication is the issue of HCPs’ attitudes towards continence care.

The attitudes of health-care providers towards continence and continence care

The language used in a care environment is important with regard to continence care.173,177 The language used was not always respectful;173 however, in situations in which staff had good knowledge of the people they cared for, staff were respectful and built good relationships with PLWD.173 Ostaszkiewicz,177 discussing coercive continence care practices, described these practices as including ‘the use of verbal or physical force to wash a person, to accept wearing continence pads or other forms of incontinence containment and to accept continence checks’.177 Ostaszkiewicz177 also suggested that chastising a person for being incontinent could be said to be a form of verbal abuse. Although some ward staff promote continence, this does not appear to happen consistently in acute settings.167 Relatives expressed concern that, although PLWD would be happy to go to the toilet if assistance was provided, staff often encouraged them to ‘do it in the nappy’.167 In addition, at times, for example when staff members were busy or appeared uncomfortable with or uninterested in providing support, routine toileting was avoided and cues ignored.163,167 Ostaszkiewicz177 recognised that ‘[c]ommunicating therapeutically about incontinence with any person, including people with dementia, involves the demonstration of warmth, compassion and humanity’.177 This requires both clinical knowledge and interpersonal and communication skills, which should all be included in education programmes.178 Both formal caregivers and family carers would benefit from such programmes, which would also enable the development of ‘empathetic understanding’177 of the emotions that a person living with dementia has in response to incontinence and its care.177

Presence of people living with dementia during outpatient consultations

There is no consensus as to whether or not PLWD should be present with their caregivers during outpatient consultations.162,164,166 HCPs believed that care recipients should be present when discussing continence problems during consultations;166 however, caregivers expressed mixed opinions.162,164 Caregivers who favour this approach view the HCP as an authority in this subject, with the result that they believe the PLWD would be more likely to co-operate with management strategies because they had been involved in the discussion.162 By contrast, caregivers who opposed this reported that they did not want to upset or make their care recipient anxious by discussing a problem that the PLWD might not fully understand or be able to control.162 Caregivers 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, but this was not the case for caregiver spouses. However, time constraints or inability to meet alone with the HCPs prevented in-depth discussions from taking place.164 Some caregivers suggested that HCPs could explain the problem and management options in simple terms when the care recipient was present in outpatient settings and then speak separately to the caregiver, providing more details.162

Initiating conversations during outpatient consultations

There was a lack of consensus with regard to who caregivers thought should be responsible for initiating conversations about incontinence during dementia-related consultations in outpatient settings.162,164,166 Caregivers believed that it is the responsibility of HCPs to initiate conversations about incontinence during both initial consultations and follow-up appointments.162 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 discuss incontinence with HCPs only when it became problematic to manage at home, whereas husbands tended to communicate their wives’ problems much sooner.164 By contrast, HCPs thought that conversations about incontinence should be initiated by the caregiver.162 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.166 However, in secondary care, not all HCPs saw addressing incontinence as a priority and many thought that the topic should be dealt with by the patient’s primary care providers, rather than during a specialist secondary care referral.166

Extended family and friends who were caregivers reported that HCPs do not always ask about incontinence during consultations.164 A lack of awareness of available resources and concerns about frightening patients/caregivers about potential problems before they occurred were suggested as possible explanations as to why HCPs do not routinely discuss incontinence and fail to initiate conversations about incontinence.166 Time was the most common barrier to discussing incontinence reported by HCPs, as HCPs believed that a considerable amount of information needed to be covered during appointments and discussing incontinence issues needed more time than was typically allocated.166 Possible solutions suggested by HCPs were for the patient/caregiver to have a follow-up appointment to discuss incontinence or to offer referrals to a nurse in continence care.166

The language of incontinence during outpatient consultations

Caregivers prefer ‘straight talk’ from HCPs about incontinence and its management in relation to PLWD.162 In a US study, Hispanic caregivers stressed that it is essential for providers to discuss incontinence using language that those with English as a second language can understand. These caregivers strongly supported having materials written in Spanish about incontinence in PLWD and the treatment plans available.164 During outpatient consultations, caregivers rarely used the term incontinence and, instead, use terms such as having accidents, leaking, losing control, wetting or messing their pants, having a urine/bowel problem, urgency, diarrhoea, loose bowels, being unable to hold it and not getting there in time, difficulty in getting to the bathroom, and leaking and soiling themselves.162,166 HCPs also tended to adopt these terms when discussing incontinence with family caregivers or patients.166 Caregivers, when questioned, said that they did not know the right terms and did not want to be disrespectful to their care recipients. However, once caregivers were made aware of the term incontinence they were happy to use it.162

Caregivers and HCPs suggested a number of different types of written information resources that could be provided to caregivers attending outpatient consultations,162,164,166 for example:

• a guide to talking to a HCP about these problems, including definitions of common clinical terms162
• a pre-visit checklist or written materials of some type to enable patients/caregivers to indicate whether or not incontinence is present, as this could then prompt the HCP to start a discussion during the consultation166
• readily available handouts that would offer more detailed explanations of what had been covered during the appointment166
• short and focused handouts that could stand alone and address a single concern.166

The importance of non-verbal cues

People living with dementia are not always able to recognise and communicate that they need to go to the toilet or indicate that they need assistance.87,152,153,157–159,162,163,165,166,171–173 Therefore, it is important to recognise the non-verbal signals, body language, facial expressions, behaviours and any signs that the PLWD use to communicate in such instances163,171–173 so that their wishes can be acknowledged.173 Listening carefully to the words or phrases that PLWD use for describing the toilet,1,159,170,172,173 as well as being able to recognise familiar gestures,1,159,173 is seen as important. New staff should be trained to recognise the importance of toileting and on how to understand individual behaviours and non-verbal cues in relation to toileting.163

A range of different non-verbal cues indicating need to go to the toilet have been observed or reported, include pulling/taking off clothing;87,160,171,179 making particular sounds, such as moaning or grunting;160,163,171 assuming a different posture;87 looking around;163 fidgeting;87,163,170,179 getting up and walking around or pacing;163,169,170,179 restlessness; 87,160 holding the crotch or stomach;87,163,170 various facial expressions, such as worry87 or sorrow;160 and going to the corner of the room.170

Hutchinson et al.163 also reported a number of affective cues, which included anger, profanity and acting in a frustrated and irritable manner. One study160 that investigated common behaviours when PLWD experience either bowel movement or urination needs found that anxiety, restlessness and taking off/putting on clothes inappropriately were exhibited by more than 30% of patients.160

Finding the appropriate words and symbols to describe the toilet

Wilkinson et al.159 sought to evaluate the comparative suitability of a range of words or symbols used to label toilets for PLWD. Among the 24 institutions surveyed, 16 used the label ‘toilet’ and x used the words ‘male/female’. Four institutions used no labelling. Only four institutions used symbols; one used the international symbols, one used a toilet symbols, one used yellow wrapping over the door and one used a ceramic plaque on which the word ‘toilet’ was written (n = 1). A further survey, among PLWD, found that the preferred word and symbol for toilet varied significantly (p < 0.05) according to mental status (assessed using the Folstein Mini-Mental State Exam and classified as normal, mild, moderate and advanced). The labels ‘Ladies’ and ‘Gents’ were preferred by those with no cognitive impairment and ‘toilet’ by those with moderate dementia. The international symbols was preferred by people with no cognitive impairment or mild dementia, whereas the toilet symbol was preferred by those with more advanced dementia.159

The importance of individualised continence care

Targeted and individualised/person-centred continence care87,168,172,174,175,178 that is established after a thorough clinical assessment has taken place87,175,177,179 is seen as important, including the use of a bladder diary.87 Individualised continence care means care that is best for the individual,87,172 avoiding harm87 and about promoting autonomy and independent living.87

Objective 2

The second objective was to identify the communication strategies and the use of individualised care planning that carers, family members and HCPs have employed to manage toileting and continence for PLWD. This objective comprised five subthemes.

Strategies for improving communication

To reduce anxiety, fear and embarrassment, it is important to check HCPs’ awareness of good communication techniques when working with PLWD.161 HCPs should consider:

• using prompting, if possible1,87,171,173
• getting to know the person with dementia, such as their previous routines, habits and lifestyle170–172 and how they communicate172
• introducing themselves and seeking PLWD approval before performing tasks165
• asking the person with dementia how they can help them manage their continence170
• communicating with the family to determine usual behaviour patterns163
• seeing the person as an individual and avoiding making assumptions.172

Caregivers reported that they sought additional information about incontinence from the internet, but were concerned about the accuracy of the information retrieved and whether or not they could understand it. This also included concerns about their searching skills.164 They wanted support and reassurance that they were providing the care that was required and they wanted information before any problems, such as incontinence, occurred so that they could feel prepared.162

One further study described how nursing staff communicated with residents’ families about methods to manage incontinence when taking PLWD ‘on an outing’.165 The advice included information about how to check and change continence pads, how to assist the resident to the toilet and how long continence pads could potentially last between changes.165

Using technology to present instructions

Two pilot studies152,153 conducted by the same authors explored the effectiveness of verbal instructions presented automatically through simple technology in helping persons with mild to moderate Alzheimer’s disease recapture basic daily activities. Data from both studies152,153 showed that the use of basic technology to automatically present verbal instructions has the potential to be effective in helping people with mild to moderate Alzheimer’s disease recapture relevant daily activities, including toileting.152,153

Components of individualised care plans

A number of different components that may be considered as part of individualised care plans have been identified, including being theory based,175 being concerned with the practical issues168 and involving multicomponents exploring both day-time and night-time care of incontinence.175 There was a consensus that the needs of both PLWD and their caregivers need to be considered.87,174–177 The advice given by the Alzheimer’s Society was that continence care plans should be tailored to the individual, with the intention of curing incontinence (or problems with toileting) whenever possible.168 Other components to consider include changing medication,168 changes to lifestyle,168 exercise,168 skin care,175,177 manipulating the type, quantity and timing of food and drink,168 and advising of the support available from HCPs,168 as well as any accessible follow-up advice.168

Ostaszkiewicz177 comments that nurses and care workers need support to develop individualised strategies to ‘optimize the care-dependent person’s rest/sleep in the context of the person’s concurrent need for continence and skin care’.177 Three studies155,157,158 described individualised care plans as part of their interventions. One study155 was conducted in nursing homes, with one member of staff from each home selected to take part in a training programme. This person was then responsible for educating other staff members. The intervention used in this case was individualised comprehensive care that focused on providing adequate fluids and meals, encouraging patients to use toilets and reducing the size of their ‘diaper’ pads. This approach differed significantly from the usual urinary incontinence care in which ‘diapers’ would be changed at scheduled times only. Improvements across the different methods (e.g. ‘diapers’, chair, commode and urinary chamber pot) of urination were observed, with 11% of residents making improvements, but this finding did not reach levels of statistical significance. In addition, 19% of residents showed improvement during the night, changing from using ‘diapers’ to using the toilet, which was shown to be significant. Nevertheless, a large number of residents’ continence status remained static.155

Two studies157,158 evaluated an environmental skill-building programme that involved a home-environment individualised intervention delivered by occupational therapists, which included toileting and incontinence. The intervention was designed to enhance the caregiver’s ability to problem-solve and to develop effective solutions to problematic situations. One of these studies was a pilot study158 in which 17 effective caregiver-initiated environmental solutions for incontinence were observed. Of these solutions, nine (53%) were accepted by the caregivers and integrated into their management routine by visit 5 of the intervention. In the later study,157 29% of caregivers identified continence as a problem area. Twenty-six attempted strategies that involved assistive devices were identified and, of these, 21 (81%) were used. Fifty-one attempted strategies that involved manipulating the type, quantity and timing of food and drink were identified and, of these, 46 (90%) were used.

One further study156 implemented a person-centred approach that focused on incontinence of residents with cognitive decline in residential treatment facilities. In this study,156 health workers were provided with training, but only 20 out of 100 health workers participated. The process outcomes were measured among all residents who agreed to participate in the study. There were no statistically significant mean differences in QoL scores before and after the intervention or between control and intervention participants. However, the quality of care improved for the intervention participants in that fewer aids were needed to manage incontinence and an increased number of urinary incontinence assessments were conducted.

Health-care providers and caregivers working in partnership

The importance of HCPs and caregivers working together to deliver individualised/person-centred continence care was a feature of three intervention studies154,157,158 and was encouraged in four pieces of non-research material.168,172,174,176 In one intervention study,154 nurse practitioners worked with the carer to plan the schedule for PLWD, which was followed up with monthly telephone calls and bi-monthly visits. In a further two intervention studies,157,158 occupational therapists worked with the caregivers to deliver solutions to toileting and incontinence problems, and this involved five visits over 3 months158 or five 90-minute visits over 2 months.157 Other HCPs that can work with PLWD and their caregivers include continence advisors168 or other HCPs specialising in continence care.172 Working in partnership with caregivers and PLWD is important168,172,176 as it enables HCPs to gather personal stories of PLWD and their caregivers,174 helps HCPs to work out the best solutions for PLWD and their caregivers and ensures that specialist help can be accessed by caregivers when needed so that recommendations from HCPs are achievable.168

Establishing a toileting routine in the home environment

The importance of developing a regular toileting schedule was discussed briefly in one study158 and one piece of non-research material87 and was the focus of one intervention study.154 In a study by Jirovec and Templin,154 the intervention group was taught an individualised scheduled toileting procedure that compensated for cognitive impairment by providing ‘memory-impaired patients’ with toileting reminders. Initially, assignment was to one of two intervention groups. One group of participants was visited every 2 months and the other group after a 6-month interval. There was also a control group. At the 6-month follow-up, the two intervention groups did not differ with respect to urinary incontinence and so the original two intervention groups were combined, leaving a single intervention group and a control group. The authors154 conducted a completers-only analysis (with 28 of the 44 participants still in the study at 6 months) and reported that incontinence decreased in the intervention group, with almost no change in the control group. Further analysis of these data using the non-parametric sign test was conducted and a significant decrease was reported in the intervention group (z = −1.83; p < 0.05). The participants were coded according to any decrease in percentage of incontinent episodes, compared with staying the same or showing no improvement. However, two previous reviews180,181 that reported on this study conducted a reanalysis of the data and, although the results favoured the intervention groups, they were not statistically significant.

Synthesis summary statements

Twenty-six summary statements were produced, with associated levels of confidence using the CERQual and GRADE approaches (see Appendix 12). The experimental quantitative research that we retrieved were observational studies that were considered to be of poor design. As a result, the ratings for evidence from each outcome generated using material from these studies were downgraded from being rated as ‘low quality’ to ‘very low quality’.182