What are the information needs of people with dementia and their family caregivers when they are admitted to a mental health ward and do current ward patient information leaflets meet their needs?

Abstract Introduction An admission to a mental health ward is an uncertain and unexpected part of a person's journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs. Methods This research was conducted in two parts: (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n = 6), and another with Admiral Nurses (n = 6) to explore information needs at the point of admission. (2) Each National Health Service (NHS) mental health trust (n = 67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts; after removing duplicates, 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified by focus groups. Results Two main categories ‘honest, accurate and up‐to‐date information’ and ‘who is the information for’ and four subcategories were derived from focus group data. Participants felt that people with dementia and their families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information, given that people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants. Conclusions People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co‐create information to ensure that they meet people's information needs. Patient or Public Contribution This research was supported by a patient and public involvement (PPI) group of people with dementia and carers who have experience in mental health wards. The idea for the study came from the group and was motivated by their experiences. The PPI group helped with the design of the study and took part in the focus groups. The information generated has been written up in this paper, and the knowledge generated has also been used to co‐create a guide for wards on writing their information leaflets and to support the co‐creation of a public information leaflet by Dementia UK about mental health admissions for people with dementia.

of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information, given that people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants.
Conclusions: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co-create information to ensure that they meet people's information needs.
Patient or Public Contribution: This research was supported by a patient and public involvement (PPI) group of people with dementia and carers who have experience in mental health wards. The idea for the study came from the group and was motivated by their experiences. The PPI group helped with the design of the study and took part in the focus groups. The information generated has been written up in this paper, and the knowledge generated has also been used to co-create a guide for wards on writing their information leaflets and to support the co-creation of a public information leaflet by Dementia UK about mental health admissions for people with dementia.

K E Y W O R D S
admission, dementia, mental health, patient information, psychiatric care

| INTRODUCTION
Living with dementia brings about many challenges, changes in mood and behaviour being very common and thought to be experienced by around 80% of people. 1 There is debate around whether changes in behaviour and mood are 'symptoms' of dementia (sometimes referred to as noncognitive symptoms, neuropsychiatric symptoms or behavioural and psychological symptoms of dementia) or whether these changes occur as a result of unmet care and support needs. 2 Where changes in behaviour and mood are severe, such that a person presents a risk to themselves or others, admission to a mental health ward for assessment and treatment may be considered. 3 As such, inpatient mental health care is often a 'last resort' to assess and treat difficulties such as depression or anxiety and to ameliorate behaviours that are difficult to manage in community settings. 4 There is no standard approach to providing inpatient mental health care for people with dementia. In the United Kingdom, the Royal College of Psychiatrists advocates for providing care in specialist wards just for people with dementia 4

| Focus groups
Two focus groups were convened using purposive sampling. The first focus group was with people with dementia and family carers.
Participants were recruited from an established patient and public involvement (PPI) group of people who all have experience in care in a mental health ward for people with dementia. The PPI group is a mix of family carers (spouses and children) and people with dementia.
Information about the focus group meeting was shared with group members via email. All interested potential participants registered via email and were asked to return a signed consent form. Six people out of the group of eight agreed to take part in the focus group.
The second focus group was conducted with specialist dementia nurses (Admiral Nurses) who had all provided support to people with dementia and their carers accessing mental health wards. Recruitment was via an email invite shared by Dementia UK to all Admiral Nurses and those interested in taking part were asked to contact the researcher. Six Admiral Nurses agreed to take part.
This yielded an overall sample size of 12 participants.

| Ward information leaflets
Each of the 67 mental health trusts in the United Kingdom was contacted via email by one author (Z. G.) and asked to share a copy of their patient information leaflet that would be given to a person with dementia and/or their family members when they were admitted to a mental health ward.

| Focus groups
To sensitise participants before the focus groups and to help initiate discussions, participants were emailed copies of five different ward information leaflets and asked to consider what they liked or did not like about each. Five leaflets were shared so as not to overwhelm participants but to provide enough examples to allow for comparison.
For pragmatic purposes, the five leaflets selected were simply the first shared with the team following the requests to NHS sites. Both focus groups took place online and lasted between 50 and 60 min. Each focus group discussion was video-recorded and transcribed verbatim.

| Ward information leaflets
Leaflets were collected from July to September 2022. Organisations were asked for leaflets they currently provide to patients and/or families. Leaflets were received and assessed against inclusion and exclusion criteria: 1. Written in the English language.
2. Given to patients and/or families when a person with dementia is admitted to a mental health ward. 2. They were in the format of videos or posters. Videos were not included as these were very light on content and were typically used to supplement information leaflets. They were used to introduce the team and showcase feedback from carers rather than impart information.
3. They were on specific treatments or medications. Both researchers agreed that saturation had been reached, noticing the same codes repeatedly across both focus groups.

| Analysis
The first-round coding was undertaken independently, and then the two researchers compared the texts that were assigned to codes to reach a consensus on broad code definitions. Secondround coding involved the development of subcategories that were refined and collapsed through discussions and close reading and rereading of the transcripts, resulting in a coding tree. Finally, the codes were synthesised and interpreted into a narrative to provide an answer to the research question. The researchers E. W. and K. H.-D. met regularly to reflect on the data analysis. To ensure the trustworthiness of the data, field notes and video recordings of meetings held on Microsoft Teams were used to triangulate the data.

| Ward information leaflets
The data generated from the focus groups formed the basis of a coding framework; this contained 17 separate coding categories, which were grouped together into three broad themes: basic ward information, treatment and care and practicalities. The units of observation were individual leaflets and the units of analysis were sentences. Manifest content analysis 11 was conducted by counting the number of times a category of interest was stated in the leaflet; this allowed us to determine whether certain types of information were more prevalent than others in information leaflets.

| RESULTS
After an iterative open and coding process, two main categories and four subcategories were derived from the data.

| Main category: Honest, accurate and up-to-date information
All participants spoke about the importance of honest, accurate and up-to-date information. Information should not make false promises such as referring to recovery or returning home, which for many patients, may not be an option. Out-of-date information was worse than getting none at all; some leaflets had been created 10 years ago and participants expected information would be outdated and could cause confusion. Participants felt that information should relate to (1) treatment and care and (2) practicalities.

| Subcategory: Treatment and care
A clear statement of the aim of admission was seen as essential by both focus groups, with family caregivers stating that this was never explained:

| Subcategory: Practicalities
Practical information on what to pack and what technology devices could be brought onto the ward was seen as important as many older people were now both familiar and reliant on such items. Information about meals, laundry, parking or public transport and how to contact the ward was all viewed as essential. Details such as examples of meals, menus or social and therapeutic activities were also welcomed as people with dementia were thought to benefit from more concrete information. Some leaflets used images, for example, in showing a picture of a meal as a food option. However, both groups felt that this required careful consideration to ensure that good-quality images were used but also that these were inclusive of dietary options for all potential patients.
Information about how wards support spiritual needs and the needs of those for whom English is not their first language was also felt to be important.
Information about the environment and facilities was found to be helpful and participants from both groups wanted to see photographs of the actual ward environment but felt that these should not Admiral Nurse participants felt that there was a balance to be struck with the use of images of the ward in that they were accurate in their representation of the ward. They reflected on their experiences of environments often seeming austere or lacking in home comfort, largely due to the risks that certain objects might present to patients, such as glazed pictures, vases, and so forth.

| Subcode: Audience
Participants of both groups discussed who wards should direct their information leaflets to, given that there were two very distinct groups: patients and family carers. The participants felt that leaflets needed to be more widely available and shared with care homes, GPs and hospitals as many of these services had been ill-informed about mental health wards and had not been able to offer any advice or sources of information and are 'seriously lacking the knowledge' (PPI Focus Group, Participant 5).

| Subcode: Timing
The timing of the information shared was also considered to be important. Participants of both groups spoke about wards needing to build trust and offering reassurance rather than listing rules. Given that people are likely to be distressed at the point of admission, families felt some information such as details of foot care could be shared at a later date when they were in more of a position to take such things on board.
We sort of need to think about who's reading this leaflet when, you know, when you are reading it when you're in the middle of a crisis and you know you've just had somebody say, right, we're going to admit them and you've just got to try and understand what's going. (PPI Focus Group, Participant 4)

| Analysis of ward leaflets
The publication dates of leaflet in the analysis ranged from 2012 to 2022. Many leaflets (n = 11) were not dated and may have been produced outside this date range. Sixty-six NHS trusts were contacted; 45 did not reply. Of those that did reply, 3 replied stating that they had no leaflets, 2 stated that they share information in a video format, 2 stated that they share both videos and leaflets and 15 trusts replied, sharing patient information leaflets. Thirty-seven leaflets were received and assessed against inclusion and exclusion criteria. A total of 30 ward leaflets from 15 different NHS trusts fulfilled the inclusion criteria. Six trusts had standardised leaflets that were used for each of their wards; we identified these leaflets as duplicates and only included them individually in the analysis if there were differences in text and appearance. Therefore, 22 leaflets were included in the final study.

| Basic ward information
Of the 22 leaflets included in the analysis, 9 were written for patients, 2 for patients and carers, 4 exclusively for carers and in 7, it was unclear who the intended audience was. Only one trust shared two leaflets for a ward: one written for carers and one written for people with dementia.
Contact details for the ward were included in 19 leaflets, 13 described the roles of staff and 20 gave a description of the ward environment and its facilities, although the level of detail provided varied significantly. Pictures of the ward were provided in 12 leaflets; most showed a picture of the outside aspect of the ward, with only one providing photographs of the internal ward environment.
The aim of the admission was described in 12 leaflets (see Table 1). Assessment and treatment were commonly described as the main aims of the admission. Intended outcomes of the admission included promoting recovery, facilitating a return home, to a care home or community setting, promoting well-being, improve quality of life and independence. Three leaflets described the importance of partnership working with families and people with dementia, one referred to specialist staff and one a specialist environment.
Eight leaflets made reference to the mental health act and to the fact that many people may not have consented to their admission. of 'therapeutic activities' was referred to in 12 (55%) leaflets and included a range of activities (see Table 2). The use and review of medications to treat distress were referred to in nine leaflets. Information about discharge was provided in 15 (68%) leaflets and some wards offered a separate leaflet on preparing for discharge and supporting discharge.

| Practicalities
Leaflets were largely focused on providing practical information relating to admission as shown in Table 3. The most commonly covered topic was visiting; of these, 19 (86%) leaflets reported set visiting hours, whereas 3 (14%) referred to signing John's campaign pledge stating that they were committed to involving family carers and allowed visiting out of any restricted hours.
Ward safety was mentioned in 16 (73%) leaflets with reference to items not to bring onto the ward, controlled access to the ward, visiting restrictions, observations, use of restraint, sexual safety, CCTV, falls, medication administration and safeguarding issues.
Details on translation or interpreter services were referred to in 16 (73%) leaflets and typically asked people to request services if required. Spiritual support was referred to in 17 (77%) leaflets.

| DISCUSSION
An admission to a mental health ward for a person with dementia usually occurs at a time of crisis and can be an incredibly distressing time for the person and their family. The provision of timely and upto-date information is important, but it must take into account the emotional distress of the people reading it. As such, the tone and T A B L E 1 Aim of admission is described in patient information leaflets.

Stated ward aims
To assess and treat males over the age of 65 years who are experiencing severe mental health difficulties and living with dementia.
We aim to provide individual care and treatment, working both with patients and carers, to promote recovery and your return home.
Our aim is to work in partnership with patients and carers to promote the mental, physical and spiritual well-being of people who access the help and support of the Older People's Mental Health Services.
The purpose of admission to the ward is to enable safe and timely assessment and treatment by specialist staff and the development of a long-term plan of care. The aim is to return you to a community setting as quickly and effectively as possible.
Our main aims are to help improve health and well-being, increase confidence and independence in day-to-day living skills and for your relative/friend to return to a good quality of life after they have left the hospital.
We aim to provide a full psychological and physical assessment to enhance individualised and person-centred care.
We aim to work together with you to help you manage your needs so that you can move forward in your life with the support you need in the most acceptable way for you.
Our goal is always to treat each person as an individual and support independence, maintain contact with loved ones and promote enjoyment in activities and the best quality of life possible.
We aim to assist recovery or rehabilitate to allow them to move back into the community. This may be to their own home, a residential setting or a nursing home.
Our role is to offer a holistic assessment and review of the person's needs.
We provide a safe and supportive environment to help you get better and return to the community, where you may continue your recovery.
T A B L E 2 Activities offered during a mental health admission.  The leaflets analysed in the study are public resources and available from National Health Service trusts. The focus group data are not publicly available.

ETHICS STATEMENT
Ethical approval was given by the University of Hull Faculty of Health Science Research Ethics Committee.
T A B L E 3 The practical information is provided in information leaflets.