Steps to implementation: Understanding barriers and enablers for implementing Arts on Prescription at Home for people impacted by dementia
Abstract
Issue addressed
Arts on Prescription at Home (AoP@Home) involves a professional artist visiting a person with dementia and their informal carer(s) in their own home to engage them in participatory art making. While there is evidence for the use of these programs, more work is needed to facilitate effective implementation. This study explored contextual barriers and enablers to implementation of AoP@Home within a real-world community aged care service.
Methods
Two remote focus groups were conducted at a community aged care provider in Sydney, Australia. Key stakeholders (n = 14) were recruited, representing: people with dementia, informal (family) carers, AoP artists, service referrers and community service managers. Focus group transcripts were analysed using qualitative content analysis and mapped onto the Consolidated Framework for Implementation Research (CFIR). Outcomes were reviewed against the Expert Recommendations for Implementing Change (ERIC) strategy compilation to inform development of a tailored implementation strategy.
Results
Four overarching themes described the range of barriers and enablers to AoP@Home implementation: (1) “I don't know enough about it” (awareness and engagement within the sector), (2) artists delivering programs, (3) awareness and engagement of people impacted by dementia, (4) practicalities of implementation. All five domains of the CFIR were represented across the four themes. The ERIC compilation provided a list of practical strategies for implementation of AoP@Home.
Conclusions
The implementation of psychosocial interventions for people living with dementia within a community aged care service is complex and multifactorial.
So what?: Organisations planning implementation should consider conducting their own pre-implementation analysis to identify context-specific strategies.
1 INTRODUCTION
There are more than 57 million people living with dementia in the world, with this number expected to nearly triple by 2050.1 In Australia, 70% of the nearly half a million people with dementia are living in the community, the majority of whom are being supported by informal carers.2, 3 As dementia progresses, it becomes more challenging to leave the house, limiting access to previously accessible community services, eventually leading to isolation and reduced quality of life for both the person with dementia and their informal carers.4-6
“Arts on Prescription” (AoP) was first described in the United Kingdom,7 and an Australian team subsequently further developed and delivered a model for AoP specifically for older people.8, 9 While group-based AoP programs have a positive impact on wellbeing,9 it was identified that people with dementia and their family carers may struggle to attend.10 To address this need, the same Australian team developed an Arts on Prescription at Home (AoP@Home) model, a psychosocial intervention that involves a professional artisti visiting a person with dementia and their informal carer(s) in their own home to engage them in participatory art making. A recent pilot study (n = 6) in Australia provided preliminary support for AoP@Home as a positive intervention option for people with dementia and their informal carer(s) living in the community.10 Adding to this, a recent scoping review concluded there was strong evidence for the use of community-based participatory arts to support people living with dementia.11 Despite these positive outcomes, and the availability of aged care funding in Australia to support program delivery,12 more work is needed to determine how to effectively implement AoP@Home within a real-world community aged care service.
Challenges in uptake and implementation of new health services is an international issue.13 Implementation science involves the use of theories and frameworks to better understand and inform this process.14 As multiple contextual factors influence implementation, a vital preliminary step in the translation and implementation of research into practice requires a detailed understanding of the environment (or “context”) into which the intervention is to be implemented.15 This process involves conducting an implementation needs analysis to determine the barriers and enablers that may impact on implementation.16 The use of implementation frameworks such as the Consolidated Framework for Implementation Research (CFIR17) has been recommended to guide implementation planning and provide a structured approach to devising implementation strategies.18 Indeed, the CFIR has been successfully applied to the qualitative analysis of focus group outcomes to inform the implementation of evidence-informed interventions into real-world practice.19 The need for development of implementation plans to support broader access to socially prescribed interventions such as AoP@Home has been recognised.20 However, internationally, knowledge on implementation of arts interventions in dementia remains in its infancy,21 and in Australia, a significant knowledge gap remains around implementing community-based participatory arts programs such as AoP@Home. Appropriately understanding and planning for the implementation process is a vital step in ensuring broader access and sustainable roll-out of programs such as AoP@Home for people living with dementia.22, 23
This study forms an important preliminary step in a broader implementation study aimed at implementing and evaluating AoP@Home for people with dementia within an existing community aged care service. The current study aims to explore contextual barriers and enablers to implementation of AoP@Home within a community aged care setting, informed by the CFIR, with potential to contribute knowledge on implementing psychosocial interventions within aged care more broadly.14
2 METHODS
2.1 Participants and setting
Participants were stratified to capture the range of stakeholders involved in the delivery of AoP@Home programs to ensure a thorough understanding of the implementation context and identify any potential implementation issues. Purposive recruitment occurred via the established community-based services and referral pathways of a large not-for-profit aged care provider in Sydney, Australia. Participants were sought from the following stakeholder groups: consumers (people living with dementia and informal carers of someone with dementia), AoP trained artists, service referrers and community service managers. Inclusion criteria for people living with dementia and informal carers were that people with dementia would have capacity and willingness to participate in a focus group and if required, had an appropriate person responsible to participate in the focus group alongside them. Carers who attended the focus group in the capacity of person responsible would support the person with dementia's participation, but would also be invited to provide their own views towards the focus group content. Inclusion criteria for artists were that they must be trained in delivering arts programs to people living with dementia.9 Inclusion criteria for community service managers were that they must be involved in coordinating the delivery of community aged care services (e.g., receiving referrals, designating programs, linking funding, etc.). Inclusion criteria for service referrers were that they must be involved in coordinating the referral of clients to aged care community services. Finally, all participants must be over 18 years of age. The sample spread over two focus groups was estimated to be sufficient to discover the majority of themes.24 Ethics approval was provided by the University of New south Wales Human Research Ethics Committee (HC210033) and all participants provided informed consent to participate.
2.2 Data collection
Due to social distancing restrictions associated with the COVID-19 pandemic, focus groups were conducted online via Microsoft Teams in June 2021. Focus group questions were informed by pilot study outcomes that provided a preliminary understanding of the implementation climate for AoP@Home.10 Focus groups were facilitated by an occupational therapist experienced with working with individuals living with dementia (first author), and notes were taken by a separate researcher (third author). Focus groups lasted around 60 min, were audio-recorded and transcribed verbatim by an external transcription service.
2.3 Data analysis
Focus group facilitation involved clarifying any ambiguous responses to ensure an accurate recording of the data.25 At the end of each focus group the two researchers (first and third authors) debriefed, discussing preliminary impressions and taking notes. This contributed to an audit trail along with the focus group questions, the carefully checked transcripts and audio files, and data analysis tables and notes.26 Deductive qualitative content analysis was initially used to evaluate focus group outcomes within the context of the focus group questions to explore barriers and enablers to AoP@Home implementation from the perspective of key stakeholders.27, 28 In line with previous research,29 this process involved sorting transcript data into a matrix organised by focus group question and participant group (i.e., people impacted by dementia, AoP artists, referrers, program managers). This allowed comparison across and within groups, and facilitated identification of common themes. Outcomes were then mapped onto the CFIR17 to identify the most influential barriers and enablers to implementation of AoP@Home and to identify any implementation-specific gaps that would require addressing prior to program rollout to maximise the potential for successful and sustainable uptake of AoP@Home within the existing community aged care environment.30 A process of quotation mapping was used whereby direct quotations were mapped across each of the five domains and 39 sub-domains of the CFIR. The next step in the analysis involved data abstraction to identify the final themes that emerged from the data and record the corresponding CFIR domains and sub-domains to reflect the key perceptions around AoP@Home implementation.27, 31 To maximise the practical impact of this study, a final step in the analysis involved reviewing outcomes against the Expert Recommendations for Implementing Change (ERIC) strategy compilation.32 There is no set formula in addressing identified contextual barriers,33 but the ERIC compilation provides a range of potential strategies to inform development of a tailored implementation strategy. Themes are illustrated with direct de-identified quotes annotated according to participant role and number (person with dementia–D, carer–C, artist–A, service referrer–R, community service manager–Mx).
3 RESULTS
Fourteen stakeholders participated across two focus groups: person with dementia (n = 1), informal (family) carer (n = 1), AoP artists (n = 4), service referrers (n = 5) and community service managers (n = 3) (Table 1). While two separate consumer dyads had originally been recruited (one for each focus group), one of these dyads chose not to participate in the final moments before the focus group began. Of the referrers, two were independent assessors who are key to linking people with Commonwealth care support funding and referring to appropriate services.34 The remaining three were care managers who work within an aged care organisation and support clients in using their Commonwealth care support funding by making referrals to appropriate services.
Participant | Focus group 1 (n = 8) | Focus group 2 (n = 6) | All (n = 14) |
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Person with dementia | 1 | 0 | 1 |
Family carer | 1 | 0 | 1 |
AoP artists | 2 | 2 | 4 |
Service referrers | 5 | ||
Assessors | 2 | 0 | |
Care managers | 1 | 2 | |
Community service managers | 1 | 2 | 3 |
Deductive analyses revealed four overarching themes that described the range of barriers and enablers to AoP@Home implementation: (1) “I don't know enough about it” (awareness and engagement within the sector), (2) artists delivering programs, (3) awareness and engagement of people impacted by dementia, (4) practicalities of implementation. Table 2 illustrates how the identified themes mapped across each of the five CFIR domains,17 with corresponding ERIC implementation strategies32 listed.
“I do not know enough about it” (awareness and engagement within the sector) | Artists delivering programs | Awareness and engagement of people impacted by dementia | Practicalities of implementation | |
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Barriers |
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Enablers |
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CFIR domains |
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ERIC implementation strategies |
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3.1 “I don't know enough about it” (awareness and engagement within the sector)
“I was not aware this program existed. So I think one difficulty is not being aware of the program, from the wider community to the assessors, but to the wider community.” (R-3)
“we've had a huge turnover of staff…we've introduced the program then. So that's quite a long time ago. Um, and nothing since then. So most of the care managers, current care managers don't know about Arts on Prescription…And we have no information with us about it” (R-5)
“that all goes back to advertising a bit more, promoting it a bit more…I think it has to come from a big range: [home care service provider], [assessment services], geriatricians. Yeah, the whole of–a big, you know a really big roll out of marketing” (Mx-3)
“Arts on Prescription is not necessarily for people who have experience in the arts, it can be for anyone so that “I won't be good enough. I'm not good at art or music” or whatever it is, so… so self-confidence and lack of experience can be a barrier for people and just make them hesitant about joining a program.” (A-1)
“The word has to get out, I guess. That it's out there, that it's available. I mean since it's worked so well with my clients, I keep raving on about it at work, so I think all my care managers know about it now.” (R-5)
3.2 Artists delivering programs
A number of barriers were raised around the process of artists delivering programs. Artists discussed the challenges around working with people living with dementia (CFIR II-A: Patient Needs & Resources), such as communicating with clients, dealing with short term memory loss, and managing behaviour changes. In line with CFIR domain IV-B Self-Efficacy, one artist described that “at the beginning when I first started, I did feel a little bit out of my depth. Not being really experienced with people with dementia” (A-4), while another discussed feeling guilt or disappointment if unable to help their client engage during a session: “When a client's family are paying for a session, and it has been organised, I often feel pressure as an artist to meet their expectations and make sure the client has experienced meaningful engagement.” (A-1).
“Things like getting up for a short walk during a session, having breaks, changing the activity can all help support the client to have more meaningful engagement.” (A-1)
3.3 Awareness and engagement of people impacted by dementia
“I find often the relatives of people…they have an expectation and almost an embarrassment sometimes of what their husband or wife is producing art wise. And I find it's almost educating them that art can be so many different things” (A-4)
“I have a client who she, was an artist in her day she doesn't do it anymore. She has dementia but it's the family that are baulking at [it]. I think the lady herself would really benefit greatly and become immersed in it, but her family baulk.” (R-5)
Other important barriers were around client concerns about program costs (CFIR I-H: Cost) and challenges around delivering services to clients from culturally and linguistically diverse (CALD) backgrounds: “from an assessing point of view, the barriers we face with all services is a lot of CALD backgrounds. So you've got the language and then the financial concern. They would be my two biggest.” (R-2).
“having some kind of background knowledge about the person that they were working with would definitely help. Knowing like their interests, their likes and dislikes um, yeah. And their ability so they can better provide like appropriate things for them that they can like manage” (C-1)
Participants identified that having a formally appointed implementation leader (CFIR V-B), such as the arts engagement manager, who is available as a central contact person for referrers, clients or potential clients to liaise with was important. To address uncertainty that people living with dementia may feel about trying or committing to an unfamiliar program, participants discussed the idea of program trials (e.g., up to three sessionsii without requiring commitment to the full program) or that “a community ‘Come and Try Day’ would be would be helpful” (A-3).
3.4 Practicalities of implementation
“cost can be prohibitive when their clients are…trying to weigh-up how they're going to get their day-to-day care done as well as them maybe seeing the art as something additional or a top of, rather than being quite a core part of what they can utilise their packages for. And maybe just that view of like leisure and self-care as not as important as some of those other domestic tasks or getting out into the community.” (Mx-2)
“I guess the sad thing there is…that you know if they could still physically do it, but there's just not the funding anymore to be able to support it…sometimes the lady might need more help in the morning, so needs help with the shower every day. So there's not enough money… if the clinical needs of a client you know they come first I guess…sadly, it would be the Arts on Prescription that would drop away first.” (R-5)
“the issue that that we possibly have at the moment is that the Arts on Prescription program is only offered…in specific regions. So the footprint is not national it's not even state-wide… We have to increase, increase our resources, our artists and that sort of thing to be able to operate it at that…overall level…to have that available to people in the areas where they live.” (Mx-1)
“so artists that were trained in working with older people so they would need to have a team of artists, they would need to have training and they would need to offer it, it would need to be a service offering as well that was in collaboration with their own you know Home Care or [Commonwealth Home Support Program] you know teams as well.” (Mx-1)
“an issue for artists, is timing, you know, like we…try to do something like make ourselves available for a certain time, but if it doesn't happen, then we don't get paid, obviously, and it's difficult to just keep that availability over and again week in, week out.” (A-2)
“staff recruitment in our team, including the artist you know it's hard to have the right artists, all the right people in the right places at the right time. So you know lots of our artists are casual and of course, if you haven't got things to offer them to do, clients, then that's really hard. They also need to make a living so I think that's a real juggle, is working out how to manage…the staffing of it.” (Mx-3)
“if we can get more grants and government grants and probably you know getting people within the government to see the benefits of it so it can be valued and delivered.” (R-5)
“the [Commonwealth funding support] under that, makes an enormous difference to the subsidised cost of the program” (Mx-1)
“if we could have some more referrals coming through like we do currently for say physio and [occupational therapy], if they could come through like um, other restorative care referrals, …that would be really good, because we know we would have a stream of people coming or. Yeah, but that all goes back to advertising a bit more, promoting it a bit more” (Mx-3)
“keeping in touch with say the care manager… we can also then provide feedback to you [the artist] about what we're finding with our clients…you see them for that time, but the effect on them goes on for the rest of the week” (R-5)
“that builds that rapport between case managers and artists…that's [feedback re. the program impact on the client] such [a] vital thing for the artist provider because you work in isolation…” (A-3)
“The only trouble with group[s] is then you have to get clients there [to the centre where the group will be held] that can be problematic if…you know, need a care worker to actually get them there and then get home again…Then of course, the other problem with COVID…it completely shuts down altogether during COVID whereas if it's one-on-one, it theoretically could still go ahead. …we have had group Arts on Prescription…and the difficulty is getting them in. It adds to the cost to the package in that we've got to provide a care worker and then you've got to have another care worker bringing them back and all that. Logistically it's a bit more difficulty.” (R-5)
3.5 Implementation considerations
Focus group findings, including barriers and enablers to the uptake of AoP@Home, were considered alongside the range of ERIC strategies,32 leading to the development of a list of practical AoP@Home implementation considerations for the specific aged care service provider involved in the study. An outline of the implementation considerations is given in Table 3.
Practical implementation considerations |
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4 DISCUSSION
Implementing a new service within existing practice can be difficult, requiring detailed planning and engagement with multiple stakeholders. This study reports outcomes from an important step in this process for a community aged care service in Sydney, Australia, to understand the barriers and enablers to implementing the AoP@Home service, in order to maximise the likelihood of effective implementation. Use of the CFIR to inform the qualitative analysis has been well-reported35, 36; through this process, we found that all five domains of the CFIR were represented in the barriers and enablers identified across the four themes. Applying the ERIC compilation32 to the findings provided a list of practical strategies to directly inform future development of implementation plans for AoP@Home. While 14 participants are not representative of all people who may benefit from or be involved in an AoP@Home program, multi-stakeholder groups involving a similar number of dementia consumers and health professionals have been used previously to identify priorities in dementia care research.37
Our study identified lack of knowledge of AoP@Home as a key barrier for both service referrers and potential clients accessing programs. If the “gatekeepers” (i.e., referrers) do not know about a program, then they will not offer it to their clients as an option, and if those same clients also do not know about what programs are available to them, then they will not generate demand. The importance of flexible case management with adequate knowledge of a range of health and psychosocial intervention options for people living with dementia has been highlighted.38 Additionally, limited access to information about what services might be available has previously been raised by carers as a major barrier to accessing services,39 and our finding that staff turnover results in less knowledge about available programs was supported in a recent systematic review.40 To counteract these barriers, participants identified the need for tailored (and repeated) education for service referrers and other key players (e.g., GPs), as well as for people living with dementia and their informal carers. Indeed, the use of tailored information has been shown to support implementation in an aged care context,41 and strategies such as educational meetings and distributing educational materials are highlighted in the ERIC compilation.32
Another key barrier that may challenge effective implementation of AoP@Home was identified as insufficient funding to support access to programs. Barriers around limited access to allied health and psychosocial interventions are well-reported in Australia,42, 43 and the importance of improved access and funding support for interventions that promote wellbeing in dementia are recognised internationally.44, 45 Despite this, our findings align with previous research, indicating that physical health care needs are still prioritised over wellbeing interventions such as AoP@Home.42, 46, 47 There is a need for greater awareness of the power and importance of psychosocial interventions to support a person living with dementia's wellbeing and quality of life, in addition to meeting their daily care needs.48 Moreover, a key feature of AoP@Home is the ability for programs to be dyadic, where both the person with dementia and their carer are active participants; the AoP@Home pilot indicated important benefits to carers who participated.10 While not representative of all people living with dementia and informal carers, active involvement from two consumers in this research was vital to include as they represented a stakeholder group that has an invested interest in this topic, and who could directly benefit from the implementation of this intervention.49 Additionally, dementia consumers continue to face barriers in being actively included in research.50
Participants identified specific barriers relating to people with dementia, including lower self-confidence, hesitance, and perhaps being suspicious of new people (i.e., artists) which may limit their willingness to participate in AoP@Home. Indeed, the potential for people with dementia to feel suspicious or unsure around strangers is recognised,39, 51 as is the fact that people with dementia may experience reduced self-esteem.52 Arts facilitators in a recent study involving a therapeutic visual arts intervention with people living with dementia raised similar concerns regarding apprehension from people with dementia around engaging with the program; however, they found that fostering a non-judgmental and failure-free space was key to overcoming this barrier.53 Engaging in arts programs has potential to specifically improve self-esteem in people living with dementia,54, 55 which in-turn improves self-rated capacity to live well with dementia,56 therefore, it is vital that people with dementia are supported to participate in such psychosocial programs. Participants in our study offered a range of strategies to support engagement of people with dementia in AoP@Home, for example, ensuring clients have access to information about the program, facilitating flexibility in service delivery, and knowing the personal background of clients with dementia including their needs and preferences, which has been recognised as an important enabler to successful implementation of similar interventions.57
Understanding the person with dementia and having specific attributes (i.e., compassion, patience) were important strategies identified to support artists in delivering AoP@Home programs by the participants in this study. In line with previous research, artists discussed a range of perceived challenges around working with people living with dementia, such as effectively communicating with clients, and working with changed behaviours and cognitive changes.58 Training can have a direct impact on skills, staff confidence, and in the quality of care that is provided to people with dementia.57, 59, 60 The artists in our study highlighted that training in working with people living with dementia and in delivering AoP@Home was identified as an important enabler to implementation and aligns with dementia care priorities.47 Importantly, as part of the broader implementation project, the Arts Engagement Teamiii from the local aged care service is developing an AoP in dementia training package for artists to expand the service. This training is being designed to be accessible (i.e., online) and low cost to ensure maximum implementation impact through artists being trained in delivery of AoP@Home nation-wide.57
In parallel with specialised training for the artist workforce, appointment of an arts engagement champion within the Arts Engagement Team was discussed as an important support to successful implementation within this setting. Champions that are effective communicators and enthusiastic have been recognised as being important to support implementation.40 Our analysis also highlighted the importance of engaging champions external to the Arts Engagement Team who could influence their colleagues to support implementation through referrals.61 Other practicalities around implementation identified in our study include challenges around coordinating a casual workforce of artists. As the service was being established, using a casual workforce was important to the financial viability of AoP@Home, as it was a new service and casual employment allowed greater flexibility.62 Despite this, focus group participants in our study highlighted barriers associated with casual work, both for artists and coordination of the service more broadly. For artists, if a planned session was cancelled, then the artist did not receive payment; such unpredictability and lack of security has been identified as a negative aspect of casual work.63 An Australian study looking at retention of aged care workers found that staff on casual contracts were 37% more likely than those on a permanent contract to leave the role.64 Finally, in line with recent research,40 program managers discussed that availability of resources (e.g., appropriately skilled artists within a client's region) may directly impact on implementation of the program. The practical implementation considerations outlined in Table 3 were developed specifically for the local aged care service involved in this study. However, as an implementation protocol has been suggested as an enabling strategy,40 the ongoing implementation evaluation will ultimately result in development of an implementation guide designed to provide broadly applicable strategies to support the design and delivery of AoP@Home programs in other organisations.
4.1 Study limitations
Focus group approaches have potential limitations, for example, information that emerges is likely to reflect shared experiences and may limit elucidation of unique experiences.25 To address this, the facilitator highlighted the importance of each participant's unique expertise and encouraged contribution from each participant to the discussion. While the sample size was small, it has been recognised that two focus groups should be sufficient to discover 80% to 90% of themes.24 Additionally, using the CFIR to inform the analysis provided a comprehensive framework to facilitate comparison of results across studies.35 While there was only one person living with dementia and one informal carer in the focus groups, their presence was an important feature to ensure representation and oversight of study outcomes from people with lived experience of dementia.65 In addition, the other focus group participants had combined broad experience from working with people living with dementia. Future work that aims for a broader understanding around the implementation of AoP@Home for people with dementia should include a larger cohort of dementia consumers. Finally, qualitative research involves a level of subjectivity that could result in bias,66 however, deductively applying the CFIR to the analysis provided a transparent framework to facilitate comparison between the different stakeholder groups, and the structured approach to analysis contributes to a clear audit trail.30
5 CONCLUSION
This study showed that the implementation of a psychosocial intervention such as AoP@Home for people living with dementia within a community aged care service is complex and multifactorial. Outcomes from this work provide an important foundation from which to develop a tailored plan for effective implementation of AoP@Home; this broadly includes: tailored marketing, appointment of champions, and education and training that should be considered across the spectrum of stakeholders to maximise implementation. While the barriers and enablers presented here are specific to this community aged care setting and may not encompass all barriers and enablers for AoP@Home implementation, this foundational piece of work illustrates the range of stakeholders and factors that should be considered when implementing a new service within the aged care sector. Any organisation intending to implement a new psychosocial program within their own service should consider conducting their own pre-implementation analysis and applying a framework such as the CFIR to provide a structured approach to interpretation and for planning strategies to address identified barriers.
Endnotes
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.