“They take a lot of pressure off us”: Volunteers reducing staff and family care burden and contributing to quality of care for older patients with cognitive impairment in rural hospitals

1Explore the ability of trained volunteers to provide person‐centred care focusing on nutrition/hydration support, hearing/visual aids and activities in rural hospitals for older patients with dementia and/or delirium. 2Explore the impacts and challenges of volunteer care for family carers and hospital staff.


| INTRODUCTION
It is universally recognised that hospitalised people with cognitive impairment such as dementia and delirium are at heightened risk of adverse outcomes. 1,2 People with dementia and/or delirium who exhibit aggressive, agitated, resistive or wandering behaviours are time-consuming and challenging for hospital staff to care for. These challenges impact on staff stress and care burden, with lack of time to support the necessary emotional care and safety needs highlighted. [3][4][5][6][7][8] Carer dissatisfaction about the care provided to people with dementia in hospital relates to perceived poor care, lack of understanding of the needs of the person with dementia, deterioration in the health and function of the person with dementia, and limited involvement of and communication with carers. [9][10][11] Care burden and exhaustion can also be experienced by carers who stay and support the person with dementia when hospitalised. 12 Providing person-centred care to people with dementia in hospitals is best practice and results in better outcomes, for both people with dementia and their carers. 6,13 In Australia, there are a number of good practice initiatives aimed at improving care and support for people with cognitive impairment and their carers in hospitals. 14,15 Despite this, the ability of hospitals to provide person-centred care has remained patchy and limited. 13 This is largely attributed | 35 BLAIR et AL.
to task-oriented and medically focused systems of care, poor environmental design, time constraints, staffing limitations and lack of knowledge and understanding by staff of the particular care and communication needs of people with cognitive impairment. 13 In recognising these barriers, the concept of using appropriately trained volunteers to support the provision of person-centred care for people with dementia and/or delirium in hospitals was adapted and piloted in a rural NSW hospital. [16][17][18] The Volunteer Dementia and Delirium Care © Implementation and Training resource was subsequently developed to support wider implementation of the pilot program. 19 In order to add to the limited evidence on the impact of volunteers in supporting hospitalised patients with cognitive impairment, 20 the current study implemented and evaluated the program in a further seven rural hospitals in Southern NSW Local Health District (SNSWLHD) using a mixedmethods design. The quantitative patient outcomes are reported in an article by Blair et al. 21 Across all sites, there was a significant reduction in rates of 1:1 specialling (1:1 observation by a nurse or security guard) and 28-day readmission for patients receiving the volunteer intervention.
The current paper uses feedback from staff, families and managers to explore: 1. Whether the program succeeded in providing person-centred care in the acute environment; 2. The impacts of the volunteer program implementation for staff, managers and families; and 3. Enablers and challenges of implementation.

| Ethical considerations
The study was approved by the NSW Greater Western Human Research Ethics Committee (Project Number HREC/15/ GWAHS/63).

| Study design
The full study involved a mixed-methods, non-randomised intervention study using historic controls for patients. Qualitative and quantitative data for staff, managers and families were collected via surveys, structured interviews and focus groups (see Table 1).

| Setting
The study was conducted in seven acute rural hospitals located in SNSWLHD. The hospitals ranged from 13 to 79 bed capacity (M = 41.14, SD = 20.37), most with only one ward (see Table 2).

| The intervention
The program involves recruiting and training volunteers to provide one-to-one practical assistance (eg, assisting with eating, drinking, walking, promoting use of visual/hearing aids), therapeutic activities and emotional support for people with dementia and/or delirium in hospitals (see Figure 1). Volunteers were recruited via local media articles, flyers and word of mouth. Volunteers underwent health service screening and an interview process to assess suitability. They participated in a 2-day group training program on dementia and delirium and their role. 19 Once trained, the volunteers were provided with orientation to the ward and ongoing support by site implementation staff.
Referral to the program was via a one page referral form completed by hospital staff for potentially suitable patients. Volunteers complete a personal profile with the patient and/or their carer which provides essential person-centred information to support their care and interactions with patient. The volunteer role is similar to that of a family carer.

| Participants and recruitment
Several participant groups are reported on: 1. Family/carers of patients receiving volunteer care; 2. Hospital ward staff; and 3. Managers Table 1 outlines the inclusion and exclusion criteria and recruitment strategies for each group.

Policy Impact
Well-trained and supported volunteers provide a lowcost strategy to improve the safety and care of older cognitively impaired patients in rural hospitals. Such programs require clear role delineation and policies and procedures for volunteers and staff. Ongoing resourcing for a volunteer co-ordinator role is key to sustainability.

Practice Impact
Trained volunteers may contribute to improvements in the quality of emotional and physical care for older cognitively impaired patients. Staff and families may also benefit from a reduction in care burden. An ongoing volunteer co-ordinator is required to carefully screen and support volunteers and foster relationships and teamwork between staff and volunteers. All staff on duty on the day of the focus groups were verbally invited to attend by managers and the group facilitator. If necessary, repeat groups were run successively to enable some staff to remain with patients and allow all interested staff to attend. Written consent was sought from each focus group participant before the group began. Due to complex staffing arrangements including rotating shifts, casual staff and staff in multiple roles, the researchers were unable to ascertain whether any staff refused to participate or how many staff were unable to participate due to timing of the focus groups Focus groups exploring enablers and barriers to implementation and successes and challenges for the program were conducted at 9 mo. The same questions were asked in each site with limited prompting for clarification as required. Questions were taken from the pilot evaluation, expanded and piloted in one site before continuing with minimal amendments. (Rf Questions in Supporting Information). The author (AB) provided feedback to facilitator after the first three groups were conducted. Only the facilitator and participants were present in the closed room within the hospital. Participants had no prior relationship with the facilitator and were not given any information about her background. Participants were advised that groups would be audio-recorded then transcribed and that responses would be de-identified and aggregated.

| Staff outcomes
The staff survey included demographic data and questions on previous training received.

Staff stress
Staff rated the amount of stress experienced in caring for patients with dementia/delirium (1 = no stress; 10 = very stressed).

Staff knowledge and confidence
Knowledge and confidence in recognising delirium and caring for patients with dementia and delirium were rated (1 = I know nothing at all/not at all confident; 10 = I am very knowledgeable/very confident).

Program expectations
Staff rated how well their expectations were met by the program on a 4-point scale from "not at all" to "exceeded my expectations."

Staff satisfaction
Staff rated agreement with four statements such as "I am happy with how the program has been running" on a 5-point Likert scale ("strongly agree" to "strongly disagree" ). Three open-ended questions were asked about what was working well/not working well and soliciting suggestions for improvements.

| Focus groups
See Table 1 for details. Focus group questions are found in the Supporting Information.

| Data analysis
Quantitative data are reported descriptively. Open-ended questions and focus group data were analysed using the process outlined by Braun and Clarke 22 for thematic qualitative analysis with deductive coding for semantic themes. Free coding was applied by two raters to produce an initial thematic structure. Person-centred care theory 23 was then used inductively to illuminate matches with deductive themes. Both inductive and deductive themes were refined and developed iteratively with the data to arrive at the final identified themes, by consensus between the two raters and another author (CB). Both inductive thematic saturation and data saturation 24 were considered achieved during data analysis as themes across focus groups, interviews and surveys for all sites were consistent, with no new themes emerging with each site. The various data sources were synthesised in parallel.

| RESULTS
Participant numbers are seen in Table 2. Demographic details of staff who returned the survey are reported in Table 3. Most staff were female, and 84% had a nursing background. A majority (79%) reported receiving sufficient training in working with confused patients. Demographic details of interview and focus group participants were not collected.

| Family interviews
Family interviews/surveys revealed that 96% (n = 77) of families interviewed rated the volunteer intervention as helping "a lot" (89%) or "a little" (8%). There were no reports of the program being harmful to patients. All families indicated that they wanted to see the program continue.
Of the 48 (57%) family carers who could recall a previous admission without volunteer assistance, 42 (87%) reported that the admission with volunteer assistance was a positive improvement in some way.

| Staff survey
As seen in Table 3, on average, staff reported moderate levels of knowledge and recognition of dementia and delirium, and moderate stress when caring for patients with dementia and delirium. Most (97%) staff survey respondents agreed the volunteer role supported them in their care of patients. A majority of staff survey respondents indicated that they were happy with how the program was running, the program had met or exceeded their expectations, volunteers were well prepared for their role, and that staff understood the referral processes (see Table 3).

| The volunteer role: Personcentred care
The overwhelming perception of staff, managers and families at each site was that the volunteers were successful in implementing the principles of person-centred care. Several managers and families pointed out the volunteers' contribution to person-centred care through eliciting information about the patient's past, providing occupation for patients focused on their choices, preferences and abilities and communicating these preferences to staff: being able to elicit information from their background, and then sharing that with staff is a great strategy when you've got those difficult moments to engage with them and do a bit of that reminiscing type of therapy.
[Manager F024] Families and managers also noted that volunteers helped to mitigate the risks of the acute care environment using person-centred techniques such as occupation rather than restriction via security guard or nurse 1:1 supervision (specialling): keeping […], anyone with dementia/delirium, occupied, they've been an extra pair of hands then someone to talk to, a face that is familiar for an elderly person. [

Contrast with previous admissions without volunteer assistance
Families reported that the admission with volunteer assistance was a positive improvement on previous admissions in some way; either through comfort and support for patients, respite for families, improved nutrition and hydration or reducing staff burden:

| Promoting patient well-being Addressing social and emotional needs
All groups noted the role of volunteers in reducing patient stress and helping them to feel happier and calmer: Providing company and meaningful activities for patients was noted by managers as a key role for volunteers, sometimes leading to improved clinical outcomes: One patient who was so lonely and she was at quite a high risk for a delirium and she didn't get a delirium, but she had a volunteer with her doing things, playing cards, reading magazines, talking about things […] She did feedback that it was lovely to have someone with her, listening to her, talking to her and she didn't feel so isolated.

Managing patient distress
Specific instances of volunteers either distracting patients or playing a key role in reducing patient anxiety, distress and agitation were repeatedly given: [She] always wanted to go home, especially when I was leaving. The volunteers got her mind off this by doing different things. I couldn't speak highly enough of them.

| Reducing family care burden
Families repeatedly mentioned their appreciation of how the regular visits from volunteers alleviated their care burden by reducing their anxiety and stress:

Carer support
Some families mentioned that they enjoyed the company of the volunteers and the information and advice they provided; the interaction with someone other than clinical staff was a welcome interlude from the stress of supporting a family member: On one occasion I was fortunate to be there at the time of the visit. The volunteer engaged with me and the knowledge and kindness she shared with me was invaluable.

| Reduction in nursing care burden
Although volunteers did not engage in clinical care tasks such as showering, toileting or medications, all groups attributed volunteer assistance with non-clinical tasks to a reduction in the nursing care burden, both physical and emotional: It takes a lot of pressure off us when they're setting them up and helping them eat their dinner and stuff like that. We can continue on with our medications and all that.
This time factor is a really big issue for clinicians when more and more is being required with less and less time […] So any opportunity we've got to have somebody here that has time to be able to do these things is really valuable for us.

| Freeing up nurses to "do a better job"
The flow on effect of volunteers assisting with feeding, hydration, supervision and social interactions was providing staff with time to be able to plan, prioritise and deliver their clinical care more effectively and equitably: It influences how they [staff] set their day, it influences how they will manage their workload.
[ For a nurse to provide that one-on-one [care] takes away from the other patients as well. So it sort of benefits everyone on the ward, not just the patients the volunteers are working with.

| Staff management of dementia/ delirium
Despite staff reporting that most had received training and felt confident recognising and managing dementia and delirium (see Table 3), family members noted that nursing staff were not always confident to deal with patients with dementia/ delirium: The nurses were apprehensive about having a patient with dementia and if they had someone [volunteer] to distract him (sic), that was of benefit to them too.

[Family 512]
A small number of nurses and managers felt that their knowledge about how to handle a patient with dementia or delirium was improved by observing the interactions and actions of the volunteers. Strategies and program activity resources used by the volunteers also assisted staff: Volunteers were an important avenue of information sharing between patients/family/carers and the nursing staff. One volunteer alerted staff to the suicidal thoughts of a patient, enabling timely referral and support. The role of the volunteers was seen as a unique and important link in the chain of care.

| Enabling factors and challenges
Staff, managers and families were asked about the successes and challenges of the program. Staff and families described the success of the program as being underpinned by careful selection, training and support of appropriate volunteers by the volunteer co-ordinator, and having clearly defined roles and procedures for volunteers (see Table 4).
There were multiple challenges reported, although none of these ultimately impeded implementation (Table 4). Staff at each site reported some minor issues where volunteers went beyond their authorised duties or made naïve mistakes early in the program. Staff emphasised that these incidents were isolated, quickly resolved and had not reoccurred. Initial staff concerns and mistrust about the program occurred in all sites. However intervention from the co-ordinator resolved these challenges in all but one hospital. The hospital with ongoing concerns was described by managers as having a pre-existing culture issue which had also impeded previous initiatives. In sites where staff found the referral form too onerous, volunteers made adaptations to smooth this process with some success (eg, volunteers complete referral forms based on verbal instructions from staff and have staff sign off). Managers reported that ongoing funding for the volunteer co-ordinator position was required to sustain the program. Referral to the program was via a one page referral form completed by hospital staff for potentially suitable patients.

| DISCUSSION
The aim of the program was to train volunteers to support person-centred care in acute rural hospitals, an environment recognised for being more medically rather than personfocused. The feedback from staff, managers and families strongly indicated that the volunteers were effective in integrating Kitwood's 23 key principles of person-centred care. This was underpinned by their completion of a personal profile with the patient and/or their carer, where volunteers gained important knowledge about the person's background, family and personal preferences. The information provided an understanding of a patient's abilities and preferences, enabling volunteers to connect and communicate with patients, to support their food choices and to provide meaningful activities.
Staff and family members perceived that the volunteers reduced emotional and physical burden for staff and families, increased patient well-being and contributed to improved quality of physical and emotional care as unique and well-linked members of the care team. These findings are consistent with other acute care dementia volunteer studies. 20 The impact and interrelationship of volunteers for patients, family carers and staff is depicted in Figure 1.
Volunteers appeared to address the main barrier to providing person-centred care in acute hospitals: time. While a majority of staff reported that they had received sufficient training in dementia/delirium and were confident in recognising and managing dementia/delirium, they noted that they lacked the time to provide person-centred care. Staff consistently reported that volunteers freed up their time which assisted in managing their physical and emotional workload. They also appreciated the person-centred information that volunteers communicated about patients and saw this as assisting them to provide better care and appropriate referrals.
Volunteers also appeared to address several major environmental barriers prominent in acute care: they provided non-restrictive monitoring for patients at risk of falls or wandering in a risky and unfamiliar environment. They also provided occupation in an environment that primarily provides stimulation only around medical procedures and no appropriate stimulation at other times.
Although a number of implementation challenges were identified, these were addressed quickly in most instances by

Enablers Challenges
Well-conceived role with clear scope of duties and delineation of roles from paid staff Issues with volunteers "overstepping the mark" early in the program (eg, walking or feeding inappropriately). All resolved quickly Careful screening of volunteers leading to appropriate selection Staff unsure about what confidential information to disclose to volunteers at handover Thorough training of volunteers (2 days, manualised, consistent) Initial staff mistrust and uncertainty regarding "untrained" volunteers "taking their jobs" or behaving "unprofessionally" with patients Written and verbal handover procedures to ensure clear communication between staff and volunteers One page referral form was too time-consuming for some staff. Proactive referral seeking required from volunteers Proactive paid volunteer co-ordinator role to recruit, train and mentor volunteers and addressed any challenges quickly Staff culture of mistrust and disengagement in one hospital ongoing Volunteer personal qualities-helpful, cheerful, amicable Sustainability of the program without ongoing funding for a volunteer co-ordinator T A B L E 4 Program enablers and challenges reported by staff, managers and families the skilful intervention of the project co-ordinators and did not hinder the program or its outcomes. Similar challenges (eg, initial staff anxiety) have been noted and addressed by sound implementation and communication in previous studies. 20 The volunteer role was described as safe and well delineated from that of paid staff.

| Limitations and strengths
Due to complex staffing arrangements in acute care, it is uncertain how many staff refused or were unable to participate in the research. However, managers did not indicate any major dissenting groups and all staff responses were very positive about the program. Similarly, due to the difficulties recruiting families to the study, it is not possible to determine how representative this group are. Patients were not interviewed due to logistical issues with recall and timely access to patients.

| CONCLUSIONS
The volunteer Dementia and Delirium Care © program is reported by families, staff and managers to be an effective way to address some of the main barriers to providing person-centred care in rural hospitals, namely lack of time, lack of person-centred processes, and knowledge and environmental limitations. With appropriate support from a paid volunteer co-ordinator, clear role delineation and sound implementation utilising the implementation and training resource package, volunteers contributed to increased quality of emotional and physical care and a reduction in family and staff care burden. Volunteers integrated into wider care teams provide a low-cost way of improving acute care for older adults with cognitive impairment. As the numbers of people with dementia increase, volunteers may become an important link in the chain of care.