Making space for palliative care: Built environments and social practices in a novel,non-clinical respite setting

Abstract

Background:

A key barrier for people with a life-limiting illness being able to remain in their home is carer burnout. Carer fatigue also puts more pressure on health services and leads to worse outcomes for carers and their loved ones. However, carers are resistant to using respite care because of concerns around quality of care, the nature of the clinical environment and leaving their loved one behind. There is evidence that greater carer uptake of respite reduces burnout, enhances carer resilience and means that more people get their wish of dying at home.

Objectives:

This study reviews a novel respite service in a suburban environment in the Australian capital, Canberra, to assess if a non-clinical home-like setting increases the likelihood of carers taking short-term breaks.

Design:

Separate, semi-structured interviews, of 10–60 min were conducted with clients, carers, staff and volunteers about their lived experiences at a pilot respite centre, ‘Leo’s Place’, run by Palliative Care ACT (Australian Capital Territory). The question guide was developed for this study, drawing on current literature and the needs of the research and the subject population.

Methods:

This study employed Reflexive Thematic Analysis, an iterative and inductive approach to constructing themes from the data, providing a rich description of the participants’ experience.

Results:

Interviews were conducted with 5 clients (alone), 6 carers (alone) and 12 client/carer dyads (together). We captured 31% of service users with either (or both) a client/carer interview during the study period. The evaluation identified three key themes. First, Leo’s Place was a lifeline where carers found the non-clinical, home-style respite welcoming and supportive. Second, this allowed carers to take a break as they felt that they could leave their loved one safely and comfortably. Last, Leo’s Place operated as an advice and support hub.

Conclusion:

Non-clinical respite care in a home-like setting can relieve the burden of care and has the potential to reduce pressure on health services and provide better outcomes for carers and their loved ones. Making respite care desirable and outside of clinical settings increases the willingness of carers to use such services.

Plain language summary

Leo’s Place is a new, pilot service in Canberra, Australia, that gives carers and people with a life-limiting illness a safe and welcoming place to take a break. It is situated in a suburban home, with catering, support services and volunteers. The vision for Leo’s Place is to be a home away from home with beautiful furnishings and no sense of being in a medical facility.

Our evaluation found this non-medical suburban home eased stress and feelings of burnout for carers and was widely accepted and valued by those who used it. Leo’s Place offered a ‘lifeline’ that enabled carers to have a break, safe in the knowledge their loved one was in a supportive environment. It also operated as an information hub, helping carers and their loved ones navigate the palliative care system.

Because of Leo’s Place success, Palliative Care ACT has received ongoing government funding, and a purpose-built facility is being constructed.

Keywords

palliative care carer respite designing hospice research informal caregiver burden carer burnout

Introduction

Research indicates that most people (58%–90% across studies) would prefer to die at home^1–5 yet in Australia, it is estimated only 4%–12% of people do so.^6,7 Age and the availability of home-based supports are key predictors of place of death, with individuals aged older than 65 years significantly less likely to die at home^5,8; while access to equipment, home-care services and nursing care in the final year of life increases the likelihood of a home death.⁵ A key barrier to dying at home is a lack of respite services for carers, defined as those people who provide unpaid care and support to family members and friends with palliative care needs.⁹ This lack of respite services^10–13 results in carer burnout, increased demands on health services and reduced support options for those with a life-limiting illness.¹⁴

Even when respite services are available, other barriers to uptake include: carer beliefs about service quality¹⁵; the confusing nature of the service environment and a lack of referrals for support services, particularly for dementia carers¹⁶; isolation and, a general lack of awareness.¹⁷ The physical design of a respite setting can also play a crucial role in willingness to use respite care.^18,19 This starts with a philosophy of care where the design of the spaces can support ‘the delivery and overall experience’^18(p.150); spaces that afford ‘dignity and family interaction’, homeliness and safety such as a nearby room, veranda or outdoor setting attached to a private room or garden spaces^18,20(p.149); universal access, sound-proofing, family suites, play areas for younger children, creative spaces, mixing privacy and communal living, air conditioning that meets the needs of the immunocompromised²¹; obvious and welcoming entryways and access to reception; a private admissions space; multiple spaces for the different needs of residents including art and music spaces, play space, a TV space, medicine space.²²

This is a consistent global problem that was further highlighted by the COVID-19 pandemic.^23,24 However, there is evidence that the provision of respite reduces burnout, enhances carer resilience¹⁵ and results in more people getting their wish of dying at home.¹⁵

A core theme in the palliative care literature is that carer ‘burnout’²⁵ is a core barrier preventing people with a life-limiting illness from staying in their home. Carer fatigue (tiredness or exhaustion with the potential to lead to burnout) also increases pressure on health services²⁶ and can result in poor mental and physical health outcomes for carers and their loved ones.^26,27 Choi and Seo²⁵ define the caregiver burden as:

. . . A multidimensional concept . . . attributed to the perception of physical symptoms, psychological distress, impaired social relationships, spiritual distress, and financial crisis that arise from caregiving tasks or care demands. Disruptive to a caregiver’s daily life, caregiver burden involves role strain and increases the level of uncertainty during palliative care. The results of unresolved caregiver burden are the diagnosis of psychiatric illness, impaired physical health status, and poor quality of life.

There is a growing body of literature on the importance of designing respite spaces to meet the needs of palliative care patients and their carers.^18,28,29 The design of palliative care spaces supports the delivery of care, with an underlying philosophy that responds to the dignity of patients,²⁰ and conveys the values, feelings and needs of the recipients.^25,29 A non-clinical environment in end-of-life care can make a profound difference to a carer’s willingness to use respite services.^30–32 Non-clinical respite design must be the antithesis of clinical care with ‘no closed doors implying secrets withheld, the endless corridors, the signposting, the artificial light’.¹⁹ Simply put, non-clinical spaces should look, feel, sound and smell nothing like a medical facility to encourage carer uptake.

In keeping with this philosophy, Palliative Care ACT (Canberra, Australian Capital Territory) is running a proof-of-concept pilot called ‘Leo’s Place’ providing short-term day and overnight respite to people with life-limiting illnesses and/or their family/carers. This residential model was designed to be as comfortable as possible, with no feel of a hospital. It is an innovative way of supporting carers as it takes the carer and/or the person with a life-limiting illness out of the home and provides care for them in a ‘home-away-from-home’ style, non-clinical environment, in an ordinary house in a Canberra suburb. The name was a deliberate design choice to honour a donor to Palliative Care ACT, and to create a sense of welcome—where consumers can speak about ‘going to Leo’s’ rather than more laden terms such as respite, hospice or nursing home.

Palliative Care ACT has innovated this model due to gaps in the delivery of respite care in Australia.¹¹ These problems include:

Lack of respite beds: Usually, the only respite spaces available are in hospices or nursing homes. For this reason, carers are extremely reluctant to use these services. In the ACT there is only one bed set aside for respite in the local hospice, with a service population of 500,000. Availability is therefore severely limited due to triaging those patients at the end of life.^32,33

Compounded stress: Without appropriate respite beds, carers do not take advantage of the limited options available, compounding the stress they experience, leading to burnout.^17,34

Poor use of services: Current respite options are underused because they do not meet the needs of carers in terms of support, information sharing or referral services.^32,35,36

Leo’s Place focuses on visitor comfort, with high-quality interior design and furnishings and carefully thought-out exterior and garden design. All meals are provided by professional caterers, and a range of free wellbeing activities are offered, from massage to art/craft, games, and gardening.^18,19,31 Leo’s Place can also be previewed easily online by potential visitors.

As health care and health systems evolve, so too must our knowledge about place and the behaviours that design affords, the nature of chronicity and caring for the ‘perpetually acute’.^37,38 Qualitative research is well placed to identify the needs of the participants and provide rich, nuanced information about the ways that non-clinical respite can fill the gaps left by medical/clinical care.³⁹ As such, this study is significant as it evaluates a new model for respite care designed to remove the key barriers for carers accessing respite services.^40,41

Aim

The aim of this study is to evaluate a novel, non-clinical respite service proof-of-concept pilot by exploring and analysing the lived experiences of carers and their loved ones who used the service. By identifying and understanding the main themes in these interviews, this study provides valuable insights into the impact of non-clinical respite and how the design of the physical environment shapes the social environment, contributing to respite care uptake and enhancing the overall health care landscape.

Methods

Palliative Care ACT engaged the University of New South Wales Canberra to evaluate Leo’s Place via a co-created evaluation process using Normalisation Process Theory (NPT) underpinned by Reflexive Thematic Analysis (RTA) and reported using the Consolidated Criteria for Reporting Qualitative Research (COREQ) 4 checklist.

NPT is a sociological theory concerned with the social organisation and dynamic work processes of implementation, of making practices routine (embedding) and of sustaining them in their social and organisational contexts (integration).^42–45 RTA is a method of qualitative data analysis whereby the researcher reflectively engages with the data to identify patterns and themes,^46,47 using (1) data familiarisation; (2) systematic data coding; (3) generating initial themes from coded and collated data; (4) developing and reviewing themes; (5) refining, defining and naming themes; and (6) writing the report.⁴⁶ The COREQ⁴⁸ were used to ensure transparency and strengthen construct validity.

In the first instance, semi-structured interviews were performed with carers and clients with a life-limiting illness who used the service. Following this first phase of data analysis, findings were discussed with key stakeholders to achieve a shared understanding of their meaning and significance, including staff and volunteers.

This research covers the period from the first client’s stay at Leo’s Place in January 2021 until June 2022. The timeframe since the interviews has provided an opportunity to observe any lasting changes or improvements to further validate the initial results. The use of a co-creation design and iterative discussions with Palliative Care ACT staff and board members adds rigour to the findings as they have been further validated by this process. These discussions were not formal interviews, and as such, we do not report these in the results. This process adds validity to the team’s interpretation of the findings, as their relevance was confirmed by participants and staff. Our findings also accord with the wider literature on non-clinical respite, carer burden and the provision of services.

The COREQ⁴⁶ were used to ensure transparency and strengthen construct validity.

Carers and those with a life-limiting illness who used the service were interviewed.

Results were distributed and discussed with key stakeholders to achieve a shared understanding of their meaning and significance, including staff and volunteers at Leo’s.

This methodology is appropriate to answer the research questions and meet the research aim as it is an exploration of the effectiveness of a novel intervention of carer respite. It also meets a need to review the implementation and management of Leo’s Place as well as its impact on carers and on Palliative Care ACT’s staff and workflow models.

The questions to the population groups are based on the Acceptability Theoretical Framework for assessing uptake of new health interventions.⁴⁹ This model explores multiple dimensions of acceptability, including the perceived burden, ethical considerations and the individual’s emotional response to the intervention. By proposing a comprehensive research agenda, the framework aims to advance our understanding of the factors influencing the acceptance and implementation of health care interventions, thereby informing the development of more patient-centred and effective health care strategies

Research design

We used semi-structured interviews to identify key themes and generate valuable insights.^47,48 This approach aligns with an interpretivist epistemology where the researcher interprets subjective meanings through an inductive, iterative process. An interpretivist epistemology acknowledges the significant influence of participants’ perspectives and meaning-making.^49–52

Participant recruitment

Participants were recruited from Leo’s Place. The criteria for inclusion were staff at Leo’s and those using the service. Palliative Care ACT uses the term client to refer to all those attending Leo’s. For clarity, we differentiate between those using Leo’s who had a life-limiting illness, described as clients, and their carers, who could stay without or with their loved one as a form of respite.

Consent

To ensure individuals did not feel obliged to participate in the study, the project team maintained a strict separation between the research and service provision. It was explicitly stated that participant involvement was entirely voluntary and would not affect their eligibility to use the service. This approach protected the autonomy and well-being of the participants and created a trusting environment. This was also all detailed in the project information given to participants. All staff, board members, stakeholders and volunteers of Palliative Care ACT were provided a Participant Information Sheet and Informed Consent Form (PISCF) and asked to sign the document.

As part of their induction prior to staying at Leo’s, carers and clients were briefed on the study, and if they agreed to an interview, were asked for verbal confirmation of their consent at the time of the interview. This was to reduce the administrative burden, as clients had already spoken of ‘form fatigue’. All clients attending Leo’s Place must be cognitively capable of consent as they must self-manage their medication needs (i.e. an eligibility criterion for people who can stay at Leo’s Place, as it is not a medical setting). Further, this accords with recommendations on best practice research for palliative patients⁵² where verbal consent combined with written information is used to alleviate the burden on the population group. When follow-up interviews occurred, the participant would be reminded of their consent and asked for verbal affirmation that they were happy to continue with the study.

Data collection

Interviews were conducted with staff, carers, client/carer dyads and volunteers associated with Leo’s Place. The interview question guide was developed specifically for this study, drawing on the current literature, needs of the research and the research team’s knowledge of the subject populations. Interviews were conducted at Leo’s Place, in the gardens or in quiet, private spaces. Five interviews were conducted over the phone during COVID-19 restrictions. Data was collected by the chief investigator (CI) and included a mix of recordings and field notes (as not everyone consented to recording). Interviews were selectively transcribed for the purposes of the study’s aim with detailed not-taking occurring when participants explicitly described their experience of Leo’s Place.

Data analysis

Interview recordings, transcriptions and/or notes were analysed by the CI using Microsoft Excel to organise field notes and iterative coding to maintain an audit trail. RTA^46,47 was employed to explore patterns and develop themes reflecting the lived experiences of carers and their loved ones. Analysis was informed by NPT,^42–44 with themes generated inductively from the data (including explicit statements and underlying meanings) and refined iteratively. The CI brought experience in qualitative, palliative care and service delivery research, which shaped the development of the overall narrative in the open coding process.

As an integral part of RTA, the backgrounds and perspectives of the research team naturally influenced the way themes were generated and interpreted. To maintain consistency and rigour, and to minimise bias, the research team engaged in regular, ongoing reflexive discussions and debriefs to explore multiple interpretations, consider how their own perspectives and experiences shaped the analysis and develop themes collaboratively. This process enhanced reliability and consistency in theme development and allowed the research team to focus on capturing the primary perspectives and experiences of those directly involved in the non-clinical respite service. This ensured a comprehensive understanding of the intervention’s impact on the individuals most closely affected by it.

As participation was voluntary, and all clients and carers who used Leo’s Place were approached to participate by the service provider, there was no opportunity or capacity for screening. We could sample only those who used the service and agreed to an interview. This limited the applicability of demographic comparisons. Participant responses were therefore analysed and grouped according to themes rather than demographics.

Results

Interviews were from 10 to 60 min, depending on the participant(s). The data gathered was highly varied due to the age and health status of clients and carers. Interviews were conducted with 5 clients (alone), 6 carers (alone) and 12 client/carer dyads (together), capturing 31% of service users with either (or both) a client/carer interview during the study period. Gender was not formally collected; however, the split was roughly 50/50 on presented gender identity for clients/carers. The first year of operations at Leo’s Place included COVID-19 restrictions, which limited community awareness and thus participant numbers for both the pilot and this evaluation. Follow-up interviews were conducted based on the need to explore changes in participants’ experiences over time, address emergent issues that arose during the research and gain further clarification on specific research findings. These were with staff and/or board members, rather than carers/clients. Participants ranged in age from their 30s to 90s, with a skew towards 60+ (80% over 60). Carers matched the age profile of their loved ones, except for two carers who were adult children caring for their parents, and a parent of an adult child.

Key patterns that recurred across the interviews reflected emotional, physical and social experiences. They were visceral responses to the home-like environment and emphasised underlying feelings and emotions such as safety; making time for everyday life; sharing stories, problems and information; diverse ways in which ‘the quality of data collected—their richness, depth, diversity and complexity. . .’⁵³ came together to form the broader categories. Overwhelmingly, both carers and clients, indicated their appreciation of, and support for, the model of care. The service is extremely effective at providing a supportive, restful care experience that significantly reduces carer/client stress.

Data analysis shows three key themes:

Leo’s Place as a ‘lifeline’

A welcome break

Leo’s Place is an advice and support hub.

The quotes below illustrate the three key themes in the participants’ perspectives on Leo’s (note: quotes are a snapshot of the total data that supports each theme and have been chosen to illustrate it).

Leo’s Place as a ‘lifeline’

There are very limited or no other available respite options available, thus Leo’s Place was a ‘lifeline’: This theme of coherence in NPT reflects how carers and clients made sense of and understood the service. ‘It meant I could get a break from a difficult home situation’ (Client, C2). Carers consistently identified the lack of available or suitable respite services and/or spaces as being a barrier to seeking respite: ‘I can organise a medical trip for me in Sydney, I can actually plan it knowing he’ll stay here, he refused everything else’ (Carer, R3). That lifeline included Leo’s Place mitigating inconvenience for those around them: ‘I didn’t need to be a burden on friends again—Leo’s really helped’ (Client, C5), and it was ‘such a relief. I felt my friends had such a burden helping me and now they aren’t obligated’ (Client, C6). That vital lifeline also extended to identifying Leo’s Place as a welcoming, non-medical space. It is not just about supporting carers to have a ‘break’ from caring responsibilities: the quality of the environment and the sense of place is integral to the effectiveness of any respite from providing care. One participant stated they felt ‘overcome at how nice it was’ (Client, C3).

The design of Leo’s Place was commended as being comfortable and restful. Carers noted that they felt much more comfortable accepting respite services because of the safe, home-like environment which ‘felt like home, but with staff’ (Carer, R8). The facility’s services are seen as a coherent solution to the challenges faced by carers. The informal design focus of the space was vital: ‘Excellent, beautiful, best thing about it is that it is not medical’ (Client, C17). Respite included not having to take care of everyday chores like cooking: ‘The food and care was so nice, I really felt pampered’ (Client, C1). Overall, the space ‘. . .felt safe—that was so important to [client] and I’ (Carer, R6).

Carers noted that it was much easier to ‘convince’ clients to stay at Leo’s because it was not a clinical setting and it did not make them feel they were ‘abandoning’ their loved one: ‘Nice, safe environment, I had no worry leaving [client]’ (Carer, R2). Clients acknowledged how nice Leo’s was and that it made them, and therefore their carer, much happier about staying: ‘We were caught between nothing or end of life at Clare Holland—Leo’s saved us’ (Carer, R9; Note: Clare Holland House is a palliative care service in the ACT Clare Holland House – Calvary Public Hospital Bruce (calvarycare.org.au)). This carer had noted that they could not leave their partner at a clinical setting as it would make them both feel like it was ‘the end’ (Carer, R9).

A welcome break

The respite gave carers a very welcome and needed break: ‘It was the first time in, I can’t remember how long, that I’ve had a break from looking after [client]’ (Carer, R1). This theme responds to the NPT theme of cognitive buy-in that resulted for carers and clients due to the service providing the time and space to carry out activities otherwise lost in the often overwhelming, daily management of caring for a loved one. The risk of burnout for carers was a common theme: ‘I had to do something—I needed a break, or I would have killed [client]’ (Carer, R2). The respite afforded to carers allowed them to undertake a range of tasks, including seeing friends: ‘I saw friends for the first time in, I dunno ages. . .it was so nice’ (Carer, R5); going out; organising a tradesperson: ‘I could actually do some life organising stuff—I got a tradie in and stuff fixed up’ (Carer, R6); seeing to their own health needs and resting: ‘I just slept, slept the whole night straight and, in the morning, I was like a new person, I don’t know the last time I slept so long’ (Carer, R1).

All carers indicated that Leo’s Place allowed them to undertake tasks that they would not otherwise have been able to do. For some, this meant finally being able to deal with their own health issues that had otherwise had to be postponed or ignored: ‘Absolute godsend, I’d had so little sleep and was just at my wits end’ (Carer, R3). Nearly all clients used the time to re-connect with family and friends and welcomed the chance to do this: ‘Had lunch with my girlfriends, it had been so long since I’d seen them, it was just so relieving, refreshing, although I did cry a bit with them’ (Carer, R4). Overwhelmingly, the response was that the respite time was needed, was refreshing and allowed them to recharge before resuming care responsibilities: ‘I was really compassion fatigued and needed the break’ (Carer, R12).

Leo’s Place is an advice and support hub

Leo’s Place operates as an information and sharing hub in a place that felt inviting, accessible and supportive: ‘There was too much info and I was overwhelmed, staff at Leo’s really helped me make sense of what was available to us’ (Carer, R8). This aligns closely with the NPT themes of collective action, experiencing the community support that is evident as a result of the implementation of the service, and reflexive monitoring in the ongoing appraisals that result from the experience of the spaces that afford behaviours that get lost in the pressures of daily life at home. Leo’ allowed clients and carers to share stories and experiences with each other: ‘I got to speak with others in a similar situation and share our experiences’ (Carer, R2), and with the staff/volunteers: ‘I didn’t know what was available to help us—until I spoke with [staff]’ (Carer, R10). It was repeatedly noted that it is very difficult to navigate the services available for end-of-life care: ‘Overwhelmed by the system and I didn’t know what to do—they [staff] helped me’ (Client, C11), and that is itself an exhausting process: ‘The system is so hard—they [staff] helped me navigate it’ (Carer, R7). The informal interactions amongst all people at Leo’s Place created a supportive environment: ‘I talked with others and shared problems’ (Carer, R12). It left carers and clients feeling less alone: ‘I got to share our problems’ (Carer, R13) and become more part of the community: ‘[client] had a great bond with the others and volunteers, it was a chance for other adult conversation for them’ (Carer, R15).

Areas for improvement

The only major problem with Leo’s Place consistently identified by clients and carers was in relation to building structural/layout, and that the bathroom facilities could be improved for ease of access. This is an issue with re-purposing a suburban home and not being able to re-model the bathroom areas. This limitation to service provision was already acknowledged by Organisation name withheld for peer review and is being addressed with a purpose-built facility now under construction (as of 2026). Additionally, very minor suggestions on improvements to processes and/or the environment were noted (e.g. provision of a choice of hot sauces in the kitchen).

While the data gathering techniques used for this evaluation did not capture ‘days saved’ or ‘services not used’ within the wider health system, there was a clear and consistent theme from carers that Leo’s Place provided an alternative to other health interventions. Given the large and compelling research literature on carer burnout and the resultant burden to health and social systems that it causes, it is highly likely that Leo’s Place has provided cost savings to the medical system. This finding should be further corroborated with purpose-collected data and analysis.

Discussion

This study evaluated the lived experiences of carers and their loved ones who used a pilot non-clinical respite service, and how the home-like design of the service was central to shaping the wellbeing experience of participants. The home-like design was not just an aesthetic; it was deeply functional in enabling respite, creating community and addressing systemic gaps in carer support. In this section, we will delve into the broader relevance of the data, that is, the heavy burden of caring for loved ones leading to fatigue and burnout, understanding the barriers to uptake of respite services and the influence of carer beliefs on service use.

The three themes in the results align with NPT.⁴⁵ The first theme, ‘a lifeline’, aligns with the concept of coherence, which refers to individuals’ understanding of the service and how it fits into their existing way of making sense of their choices and practices around care. A barrier to carer’s use of respite, or where services are scarce, is that they tend to prioritise the patient’s needs over their own health⁵² and find it difficult to accept help as it engenders feelings of inadequacy.⁵³ A non-medical design re-frames respite as an ordinary part of the everyday, rather than a medical or pathological need. This sense-making from carers removed psychological barriers to seeking respite. Leo’s Place was understood as something safe, legitimate and different from clinical care. This increases access to respite because it responds to the dignity of patients,⁵³ and conveys the values, feelings and needs of the recipients.^18,32,54

All carers mentioned experiencing some or all of the dimensions of ‘burnout’^25,35 and consistently identified the lack of available or suitable respite services and spaces as a barrier to seeking respite, demonstrating their need for a service such as Leo’s. Before Leo’s Place, carers were left with two choices: ‘soldier on’ in their caring role while their own mental and physical health deteriorated (often to the point of requiring medical intervention themselves), or to use ambulance, hospital and nursing home services as emergency ‘respite’. In line with the Acceptability Framework criteria of perceived burden, ethical considerations and the individual’s emotional response to the intervention,⁴⁷ carers universally noted that respite at Leo’s Place alleviated some of the burden of caring and allowed them to attend to other needs.⁵⁵ Leo’s Place reduced the strain on carers and made them less likely to use other health services and allowed some to deal with their own health issues (that were otherwise untreated and growing in severity). The ease of use of the service alleviated burden, and the welcoming home-like nature significantly reduced resistance from carers and clients to use respite. The overwhelming positive affective experience was that carers and clients felt good about coming to Leo’s Place. This emotional response helps us to understand the factors influencing acceptance of, or resistance to, uptake of respite care and as such informs better ways to develop patient-centred health care strategies.

The second theme, ‘a welcome break’, aligns with the NPT concept of cognitive participation⁴⁰ and indicates that Leo’s Place allowed carers to undertake tasks they wouldn’t have been able to do otherwise.⁵⁶ This suggests they perceive the facility as a beneficial and valuable resource, reflecting cognitive buy-in. This aligns with the broader literature on home-like respite meeting the needs of both carers and the cared for, whether they are attending alone, or with family (including young children and/or family pets where applicable).^28,29 High-quality respite therefore needs to consider couples and whole families, where they are involved, ensuring social supports, organisation and planning, physical activity, family time, leisure activities, other resources and self-care are available and/or used post-respite.⁵⁴

The design of the respite therefore affords agency and increases cognitive participation,⁴⁹ and the willingness of individuals and their families and friends to use the service.³² The building design, the interior design, the colours and materials all contribute to spaces that create safety, dignity, privacy and rest—the activities and behaviours that design and materials afford.^32,57 This includes the integration and use of gardens,¹⁸ even just having a view of the natural world,^31,57,58,59 which enhances client experience and agency.^18,28 At Leo’s Place, participants engaged and invested in new everyday practices. They recommended it to others and participated in new routines.

The third theme relates to collective action and reflexive monitoring in NPT. Collective action refers to the implementation of the service, while reflexive monitoring involves ongoing appraisal and evaluation.^45,60 The home-like design and affordances of the spaces enabled connection to social infrastructure and a therapeutic community. It is the practical and social work of sharing chores, providing mutual support, exchanging advice and knowledge, where the participants were able to assess the effectiveness of their stay. The design of the physical environment acts as a facilitator for informal care networks, which extend beyond the respite period.⁶¹

By linking these themes to NPT⁴⁵ we can demonstrate how the concepts of coherence, cognitive participation, collective action and reflexive monitoring provide a framework for understanding the experiences and processes at Leo’s Place. The themes help illustrate how the whole-of-design approach aligns with the needs of carers.^62,63 This approach ensures that all the components of a building create the sense of being home and not in clinical medical-style spaces. The design needs to invite and then enable a person to feel like they are in a space that mimics comfort, care and safety.^58,62 It promotes active engagement and fosters a supportive and reflective environment, all of which contribute to the normalisation and integration of the respite services into the lives of carers and clients. These findings accord with previous research that identified carer concerns over the respite environment being a key barrier to their use.⁶³

Implications, strengths and limitations of this study

The findings of this research have several significant strengths. First, the study shows the positive impact of Leo’s Place on carers and clients, emphasising the importance of accessible and tailored respite care models. Second, the comprehensive evaluation framework used serves as a valuable blueprint for assessing similar non-clinical interventions in the future. The study’s main strength lies in its qualitative approach, which allowed for an in-depth exploration of participants’ experiences and perspectives.

A limitation of the study is the exclusion of perspectives from other family members or friends of the dyads, which may have provided additional insights into the broader impact of Leo’s Place on the participants’ support networks. A further limitation is the self-selecting nature of the sample; this was required due to the burden of risk on the target population and the requirement to have no implied coercion as part of the ethical conduct of this research.

When testing the themes and findings with Leo’s Place staff and volunteers, they concurred with the findings and did not identify any client/carer experiences outside these findings that they were aware of. The potentially subjective nature of this type of data collection and analysis is always a risk in qualitative research, especially with a diverse population group. This was mitigated as much as possible with the methods outlined above. Selective transcription was undertaken to preserve anonymity, as many participants voluntarily shared private medical information as part of explaining their context for using Leo’s Place. Despite these limitations, the research contributes valuable insights that can inform policy and practice in the field of non-clinical respite care.

This study adds valuable insights to the existing literature on the benefits of out-of-hospital respite for carers, including rich insights and in-depth understanding of carers’ experiences, challenges and perceived benefits, helping to humanise the issue and highlight the importance of non-clinical respite care; identifying key factors in successful non-clinical respite programs, including the model of care, and the specific needs addressed. Identifying best practices can help improve the design and implementation of non-clinical respite programs.

This research also informs health care policy by demonstrating how non-clinical respire care in a home-like setting can help alleviate the burden on the health system. Decision-makers, therefore, may be more inclined to support and invest in these initiatives. Given that participants used Leo’s Place instead of the alternative public or private hospital or aged care for their loved one and/or traditional health care for themselves, this study demonstrates the potential for the cost-effectiveness of this model of care, which is a strong argument for increasing funding and support for these services. Our study fills a gap in the literature on a specific population within a specific region and context. This has not been covered in previous studies. Combined with existing evidence, this study strengthens recommendations for implementing non-clinical respite care as part of a comprehensive support system for carers. This is especially valuable in the context of an ageing population and increasing demand for caregiving services.

Conclusion

This evaluation of Leo’s Place has found that Palliative Care ACT has achieved its aim of providing a novel respite service to cater to a large unmet need. The provision and uptake of respite services make a significant difference to the lives of carers and those with a life-limiting illness. Carers, in particular, carry a very difficult emotional and physical burden in their role, and Leo’s helped alleviate the stresses of caring. More importantly, Leo’s provides a safe, welcoming respite environment that clients and carers feel comfortable using.

NPT was a useful framework to understand the impact of how re-framing respite care in a home-like, non-clinical setting helped to normalise how carers made sense of their choices to use, or not, respite care. This reflects the sense-making or coherence aspect of NPT, and consequently engagement with the service. The Theoretical Framework of Acceptability enabled an understanding of how and why carers and clients engaged with Leo’s Place as a different model of respite care. The components of the framework, including affective attitude, burden, ethicality and self-efficacy, provide a person-centred research approach for those receiving the intervention and those delivering the intervention. The success of Leo’s Place has been recognised by the ACT Government with ongoing funding, and Palliative Care ACT is now working towards a purpose-built facility to continue this essential service.

Footnotes

Acknowledgements

The authors would like to acknowledge the participants in this research, Palliative Care ACT, and Dr Louise Mayo, for their vision and insight.

ORCID iD

Penelope Bergen

Ethical considerations

The collection and analysis of data for this evaluation was approved by the University of New South Wales Human Research Ethics Committee (Approval No. HC210032) and adhered to the Australian NHMRC National Statement on Ethical Conduct in Human Research. This project used written and verbal consent processes to seek informed consent from participants prior to the collection of data. Quotes used have been selected to maintain anonymity for participants. All methods were carried out in accordance with relevant guidelines and regulations.

Consent to participate

Consent concerns were addressed through established best-practice procedures. All participants were provided with a PISCF. For clients of Palliative Care ACT, the PISCF was provided as part of the information/welcome package of documents for Leo’s Place as well as when they received the recruitment invitation email from Palliative Care ACT. The PISCF was also provided (via email) when participants contacted the research team about taking part. Participants were asked to read the PISCF and had sufficient time to consider their participation because there was at least 48 hours between receiving the information and needing to agree/not agree. Participants were advised to contact the researcher(s) if they had any questions, and once they were comfortable providing their consent to participate, were asked to sign the informed consent form and return it to the researcher(s) prior to data collection by bringing it to the research site on the day of data collection for interviews. As noted above, participants were provided with the PISCF in various ways with multiple opportunities to provide written consent. At the time of data collection, participants were read the verbal consent script by the researcher(s) before the data collection commenced. Participants were asked to advise the researcher(s) if they had any questions. If the participant verbally provided their consent for the researcher(s) to proceed with the data collection, their consent to participate was recorded by audio recording in the informed consent declaration component of the verbal consent script. This verbal informed consent process is appropriate for the data collection method and participant group because it reduced the burden on the participant group, and there is almost no risk in the research project for them. It also matches with recommendations on best practice research for palliative patients, where verbal consent combined with written information is used to alleviate the burden on the population group.^52,64-66

Consent for publication

Not applicable. No identifiable participant information is included in this evaluation. No individual data, images or case details required consent for publication.

Author contributions

James Connor: Formal analysis; Investigation.

Penelope Bergen: Writing – review & editing.

Vanessa McDermott: Writing – review & editing.

Louise Mayo: Conceptualisation.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by Palliative Care ACT.

Declaration of conflicting interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: J.C., V.M. and P.B. declare no conflicts of interest. L.M. is Palliative Care ACT President. This conflict was managed by L.M. not being involved in data collection. L.M. did contribute to interpreting the data.

Availability of data and materials

The raw datasets used and/or analysed during the current study are not available, as per the ethics approval and research agreement with Palliative Care ACT. Re-analysis was not within the ethics approval.

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