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Abstract

Background:

Bereaved carers’ perspectives on the quality of end-of-life care in residential aged care homes (RACHs) provide critical insights into person-centred care delivery and support provision. Understanding bereaved carers’ experiences of formal and informal support, and their perceptions of staff responsiveness to residents’ values and preferences, is essential for improving end-of-life care standards.

Objectives:

To capture bereaved carers’ perspectives on formal and informal support received and the delivery of person-centred care within RACHs.

Methods:

A descriptive qualitative study used free-text responses from an online survey for bereaved carers whose loved ones died in a RACH between 2021 and 2024 in Western Australia. Questions were structured according to the six priorities of the Western Australian End-of-Life and Palliative Care Strategy 2018–2028. Open-ended items allowed participants to expand on their experiences of social support before and after death and to comment on the extent to which residents’ and families’ values were taken into consideration. Thematic analysis examined carers’ perceptions of informal and formal support received and care provided.

Findings:

Among 317 respondents representing 46 RACHs, five themes reflected carers’ perspectives: (1) Stretched thin: carer concerns about unmet needs; (2) Navigating gaps: carer experiences with end-of-life care; (3) Seeking involvement: carers’ role in care decisions; (4) Navigating decline: challenges in dementia care; and (5) Caring for the carer: the impact of RACHs and community support.

Conclusion:

Bereaved carers perceived significant variability in person-centred support for themselves and the residents within RACHs, with quality often dependent on individual staff skills, confidence and communication style, and timely access to doctors or palliative care services. However, carers spoke positively about the support from the wider community. The expressed feeling to be cared “about” rather than just cared “for” could be explored by a collaborative compassionate communities approach to care integrated in RACHs. This may strengthen the capacity of the wider community to support carers before and after bereavement.

Keywords

palliative care end-of-life care compassionate communities bereavement residential aged care family carer support

Introduction

When family caregivers can no longer cope with the escalating demands of care or when older adults cannot remain at home due to high-level care needs without appropriate support at home, these individuals may be admitted to residential aged care homes (RACHs).^1–3 Given that many residents live with life-limiting conditions and will likely remain under the care of these homes until death, RACHs are often the settings where palliative and end-of-life care is provided to residents.⁴

Ideally, the care provided by RACHs will be person-centred and family-inclusive, where residents are valued and care is aligned with their specific needs, values, and preferences to maintain their sense of well-being and belonging.^5,6 Family-inclusive care extends this philosophy by having proactive conversations between RACH staff, residents, and their families about future care, particularly for residents experiencing cognitive decline.⁴ Their involvement facilitates communication and prepares families for end-of-life issues, building trust in care providers. This approach acknowledges families’ emotional burden while helping residents maintain crucial relationships and feel at home.¹

In practice, delivering quality, person-centred end-of-life care in RACHs faces significant challenges. In Australia, palliative care needs in RACHs are underestimated; over 90% of dying residents could benefit from palliative care, yet only 6% historically received it.⁷ Issues such as chronic staffing shortages, inadequate training in palliative care principles, and high turnover may compromise care quality and impact on the experience of the dying person in RACHs.⁸ Communication barriers may occur, with taboos around death discussions preventing proactive end-of-life conversations.⁹ Systemic challenges, such as unclear governance, staffing, and fragmented care networks, may hinder effective collaboration between RACH staff, external providers, and families, impacting the quality of care delivered.¹⁰ For residents and their families, the transition to RACHs may bring profound losses, including loss of autonomy, identity, and social connections, resulting in grief.^11,12 In particular, families may struggle with their role shift from caregivers to visitors and wish to be involved in care decisions.¹³

In response to these challenges, the Australian Government, working with states and territories, created the National Partnership Agreement (NPA) for Comprehensive Palliative Care in Aged Care to improve both the availability and standard of palliative and end-of-life services in RACHs.¹⁴ To understand the partnership agreement's impact in Western Australia (WA), the State’s Department of Health End-of-Life Care Programme commissioned a three-part evaluation examining palliative and end-of-life care initiatives in RACHs from the perspective of bereaved carers and RACH staff.¹⁵ This article reports on bereaved carers’ perspectives from the first phase of the evaluation.

Methodology

Objectives

This article aimed to capture the experiences of family carers of RACH residents about formal and informal support provided to carers, and the extent to which care was responsive to the values and preferences of the residents and their carers before and after bereavement.

Design

Using a descriptive qualitative approach informed by a pragmatic lens, this paper presents findings from free-text questionnaire responses in this cross-sectional study exploring bereaved carers’ perceptions of support and care responsiveness in WA RACHs.^16–18 The six priorities from the WA End-of-Life and Palliative Care Strategy 2018–2028 guided the study design and questionnaire structure: (1) care is accessible to everyone, everywhere, (2) care is person-centred, (3) care is coordinated, (4) Families and carers are supported, (5) all staff are prepared to care, and (6) the community is aware and able to care.¹⁹

A reference group guided the study design and analysis, including bereaved carers, RACH staff, the Metropolitan Palliative Care Consultancy Service, leaders from consumer advocacy groups, and representatives from the WA Department of Health’s End-of-Life Care Team. To enhance rigour, the reference group was consulted and provided feedback to the research team during regular online meetings, and when attendance was not possible, feedback was obtained via email.

Recruitment and data collection

Eligibility criteria restricted participation to bereaved carers whose relatives or friends had died in a WA RACH between 2021 and 2024 and were able to complete the questionnaire in English. The questionnaire was extensively promoted using multiple online and traditional advertising methods.

Data collection took place between February and May 2024 via an online questionnaire hosted on the University of Western Australia’s REDCap platform. Further information on the questionnaire can be found in Aoun¹⁵ and Aoun et al.¹⁸ Questions primarily asked participants about their experiences of end-of-life care in RACHs. Twenty-eight of the 138 questions included an open-ended text response to enable participants to expand on their answers to specific questions (such as “Were your relatives values respected and taken into account? Additional comments” or “Informal support before death – what was most helpful?”) or general questions (“Based on your experience, what would you improve and why”) and the final question (“Feel free to write down anything else.”) This allowed the capture of any additional experiences about care provision that were not raised in closed ended questions.

Data analysis

Questions with the most open-ended responses answered included the follow-up question of “What was most helpful?” to the question “What sources from your own social/community networks have supported you after your relative’s death?” (202 responses), “Based on your experience, what would you improve and why?” (181 responses), and the follow-up question of “What was most helpful?” to the question “What sources from your own social/community networks have supported you before your relative’s death?” (163 responses). Thematic analysis of free-text data focused on carers’ perceptions of person-centred care provided to residents and the extent to which they felt supported.^16,20,21 Data analysis involved familiarisation with the data through line-by-line reading of responses, initial manual inductive coding, grouping codes into themes iteratively, and reviewing themes. Several rounds of coding and discussing findings occurred with the team of experienced palliative care researchers and clinicians, which fostered reflexive analysis.

Findings

Participant characteristics

Three hundred and seventeen bereaved carers responded to the questionnaire. Eighty-nine percent of bereaved carers were relatives of their RACH resident. The participants were 63% female, 47% university educated and 62% married/partnered. The median age was 51 years (range 18–91). RACH residents were 55% female, 46% had a dementia diagnosis, and 84% of the RACHs were in metropolitan areas. Residents had spent a median of 1.8 years in the RACH before their death and their median age was 86 years (range 60–102). Forty-six RACHs were represented amongst the respondents to the questionnaire. Only 30% of bereaved carers had been the main carer for the resident. Further demographic information is reported in Aoun.¹⁵ Bereaved carers reported that 41% of residents received palliative care services, 30% did not, and 29% were unsure. Given that palliative care teams in WA often consult with the RACH staff rather than provide direct care to residents, the carers did not always know whether the resident was receiving palliative care services. As one bereaved carer (BC238) reported, “I wasn’t told about a visiting palliative care team, and don’t believe the team was contacted for Mum’s palliative care.”

Five themes were constructed from the free-text responses of the bereaved carer questionnaire. Although each theme captures a specific dimension of experience, they intersect in practice, revealing how everyday care, communication, decision-making, and support are experienced as part of a wider relational and organisational context.

Theme One: Stretched thin – Carer concerns about unmet needs

This theme describes how workload demands and limited staffing affected carers’ and residents’ day-to-day experiences, shaping carer perceptions of the timeliness and consistency of care that staff were able to provide. Carers described how staff “tried their best, but it’s quite a large workload” (BC138) and “I know there were staff shortages, and this meant there was not time to spend with Mum other than to perform a function and then leave” (BC284). Families felt this negatively affected the timely assessment and provision of care, including “concerns about dad’s comfort level and the appropriate level of medication” (BC285). Significant variability in perceptions of staff performance and competence was reported, with some carers describing their experience with “some very competent [staff] while others required more support/guidance and upskilling in some aspects of care” (BC241). Many carers described staff as overworked, not having sufficient time to provide person-centred care. “Some staff were always caring and respectful, while others, because of a lack of staff, didn’t have the time to put into the needs of the residents” (BC321). Another carer commented that their loved one:

really loved the communication with staff, but felt they were always rushed, and she didn’t want to be demanding . . . Lack of staff meant there would have been long periods where Mum would have needed assistance, but no one was there to check on her. (BC284)

Carers reported that their experiences were dependent on the care and compassion experienced from individual staff members. They reported that some staff demonstrated these values to residents, whilst others were indifferent or only task-oriented, thus shaping the bereaved carers’ perspectives of the quality of care provided at the RACH. One carer (BC287) described the importance of care being more than checklist-based, saying, “Grandad always had clean bedding, clothes, showers, and his medication – but care is more than that.”

Some carers were concerned when items such as glasses, dentures, or hearing aids went missing, impairing residents’ ability to communicate or eat. Despite these challenges, these carers usually acknowledged staff efforts to address such issues: “spectacles and other items sometimes went walkabout due to other dementia residents wandering around – attempts always made to relocate and return” (BC304).

When high-quality, person-centred care was provided, it had a profound impact on both the resident and their families. Carers appreciated that the RACH staff met residents’ needs and paid attention to their everyday, routine preferences. This made the family member feel that “she was loved and she was respected, and she was treated with dignity” (BC66).

Theme Two: Navigating the gaps – Carer experiences with end-of-life care

This theme reflects carers’ accounts of both deeply relational, person-centred care and gaps in end-of-life care, illustrating how moments of compassion coexisted with structural pressures that challenged consistent care at this time. Despite frequent comments regarding systemic workload pressures due to understaffing, many carers also reported that individualised, relational care still occurred within RACHs. When this happened, they expressed gratitude, recognising the significant positive impact that personalised care had on the perceived quality of care provided to the resident. Individualised attention and care provided to the resident by staff were a source of comfort when bereaved carers recalled the end-of-life care experiences of their family members. One carer commented that “the staff at [RACH] were outstanding, so kind and compassionate, taking Mum’s wishes and our wishes into consideration at every step. Couldn’t ask for more supportive and respectful care” (BC238). Another carer described their positive experiences when their father was dying:

They gave mum the option of staying with Dad, once it was evident that he had only days/hours left to live and also looked after and supported Mum and us as the family. They bent the rules for family visits. . . That was a brilliant example of how to look after someone who is dying and support the family through the experience. Because of that, we felt we could give Dad a “good death.” (BC220)

Small acts of kindness and support to both the resident and the family at the end of life had a lasting impact on carers.

However, several bereaved carers raised concerns about their perception of inadequate end-of-life care, including poorly managed symptoms, delayed pain relief, and limited communication with families during this time. Carers reported frustration with navigating end-of-life care provision by RACH staff, often highlighting the mixed care received: “Priority was to be comfortable, which unfortunately there were many issues with, including delays in medical review/administration of symptom relief medications/late referral to palliative care [but they] supported family being present continuously and last rites by priest” (BC12). When the palliative care team was involved, participants often commented that they were seen infrequently or had limited, late or short interactions with the team.

The perceived “lack of coordination with GP and [RACH] staff with medical plan not implemented in a timely manner” (BC226) was frustrating for families, with some wishing that “every resident coming into aged care facility should have a palliative care plan set up” (BC225). However, others indicated the benefit of having a “regular GP to the [RACH]” (BC278) and appreciated the “always consultative and open discussion” (BC307) with GPs and RACH staff.

A difference was noted between standard care provided versus end-of-life care, as reported by a carer (BC226), stating that staff were “competent in most day-to-day care but very limited skills in palliative care [were] demonstrated multiple times during end-of-life care.” The same carer summed up Theme Two well, recognising that “there is huge scope for increasing palliative care knowledge and skills for residential care facility workers. Though the staff were caring and kind, [the lack of staff’s palliative care skills] was concerning for the family and meant it took much longer to achieve good symptom management and comfort” (BC226).

Theme Three: Carers seeking involvement in care decisions – Chasing information, advocating, and wanting to be heard

This theme encapsulates carers’ perceptions of being positioned at the margins of decision-making, prompting active efforts by carers to obtain information, influence care, and ensure their concerns were acknowledged. Limited communication between RACHs and families was a recurring challenge reported by carers. They often felt excluded or poorly informed, with limited updates on care plans or changes in residents’ medical conditions. Carers described the need to advocate for their loved one when they felt their needs were not being met, calling for more timely provision of care, including assessment and management of symptoms. As carer 12 exhorted, “listen to the family members. Take things seriously.” Another carer (BC226) described:

I felt a lot of pressure to advocate for my grandmother when her symptoms were not well controlled and often had to raise issues multiple times or escalate to more senior staff to achieve outcomes. This detracted from my ability to [be] present as a family member and was quite stressful, in addition to the distress of seeing my grandmother so uncomfortable. . . . I am concerned for [RACH] residents who do not have friends or family to advocate for them.

The level of frustration experienced by the carers in their advocacy for the resident was evident throughout their responses in the questionnaire. One person described how “agency staff and some permanent staff didn’t know how to change a catheter or stoma. Mum was bed bound for last 2 years of her life and had to call to get turned. Then [the RACH staff] asked why she thought she was so important!” (BC294). Another stated that the family “advocated on behalf of my father every day like bashing one’s head against a brick wall” (BC264).

Although some carers reported the positive impact of timely and transparent communication in decision-making, they described that good communication did not routinely occur. They sought to initiate conversations seeking timely information and interventions for their loved one. Rather than being proactively informed or included in care decisions by the staff, many carers reported actively pursuing updates, particularly when function declined or disease progression occurred. This was emotionally draining for the carers.

The importance of family involvement in care decisions and its lasting impact on the family was highlighted for residents living with dementia, as noted by carer 270, recommending:

More dementia reviews and the ability to move to higher level care as needed . . . More information and involvement of a palliative care team or staff BEFORE entering palliative care stage so that decisions are made collaboratively and with an understanding of what is happening and why. I am under no illusions about my mother's deterioration, but she was very frightened at the end, and I have been left with the impression she was dehydrated until she passed away because it was more convenient.

Theme Four: Navigating decline – Challenges in dementia care

This theme describes how carers perceived the quality and consistency of dementia care, highlighting both positive examples of personalised support and areas where limited staffing or expertise affected residents’ daily experiences. Bereaved carers spoke of the importance of the resident maintaining regular routines, having opportunities for meaningful activity, and preserving personal preferences through small, everyday actions amid memory loss. Carer 17 described how the RACH “had a walk-through garden area where my mother-in-law could continually wander around, which was her favourite thing to do.” Similarly, another carer reported that “The [RACH dementia care] staff as a whole were very caring and supportive” (BC3). Another carer described the high-quality care that their loved one received at the RACH, saying “[the RACH] provided exceptional care for dementia patients” (BC17), highlighting positive experiences of dementia care in RACHs.

While some RACHs provided thoughtful, dementia-friendly environments and individual staff demonstrated compassion and effort, bereaved carers reported inconsistent care arising from staffing shortages, variable skill levels, and poor organisational responsiveness. “I believe if she had been allowed to see a palliative care team, she would have had a better quality of care but with conditions like Parkinson’s and associated dementia you get told well we don’t know when they will die” (BC242). Carers of people with dementia often noted that their loved ones’ reduced communication abilities made them more vulnerable to unmet needs. One carer (BC284) described the negative impact of communication on the provision of care:

Communication was difficult. English was not the first language of many staff, Mum was hard of hearing and becoming disorientated, and from my observations each day, the contact was pretty minimal and mainly functionary.

As symptoms progressed, some carers felt they had to closely monitor the care provided to the resident. This was complicated by the resident’s dementia condition, in which a carer commented that “she had advanced dementia and wasn’t able to make the best decisions for herself” (BC16). Carers commented on the lack of dementia-specific knowledge or training of staff, particularly as the dementia progressed:

My main concern is around the later times in her care when she really needed more specialist dementia care, and she just wasn’t getting it. I believe she would have lived longer, and still with a reasonable quality of life, had the specialist dementia care been available to her. I had nowhere near enough specialist advice, checks or feedback during her time, and it was a very sad end to a highly productive, intelligent, and high-achieving life. (BC270)

Theme Five: Caring for the carer – The impact of RACH and community support

This theme explores how carers experienced the support available to them within the RACH and across their wider community, highlighting the extent to which formal and informal networks shaped their wellbeing before, during, and after the resident’s death. Carers’ experiences of support received were variable. Some carers described high levels of satisfaction with support received from the RACH, particularly when care was perceived as compassionate and relational. One carer shared that “Mum received amazing care for the entire time she was in care. The residential care facility team felt very much like an extended family” (BC278), and another described that “my father was well cared for and we (often 3 of us over night) were allowed to stay and offered all meals and access to come and go from [the RACH] at any time of the day and night over dad’s final 5 days” (BC285). However, others reported a lack of pre-death support, particularly in relation to navigating practical matters. Carer (215) described, “I would have liked some more psychological and mental health support to help me cope with watching my mum slowly die over 3 years.” Several carers expressed a desire for clearer guidance on accessing services, understanding available financial support, and navigating the healthcare system.

Carers did receive support from a range of sources in their community, with most comments on informal support being positive, both before and after bereavement. Informal support networks were generally perceived as highly beneficial, particularly in providing emotional comfort and opportunities to talk about their experiences. Bereaved carers appreciated “knowing that people cared, and I wasn’t alone” (BC316), having “support from friends and being able to talk about how I was feeling” (BC278), and spiritual support from their church through prayer and outreach. Several participants described that having family support with decision making and logistics eased their burden, reporting “my family . . . are great, we’re very close and supported each other during Mum's whole dementia journey” (BC238). They also described the helpful practical support received, such as “cleaning, picking up things from the shop, providing advice, checking in, offering to pick up medication” (BC79). During the end-of-life period, one carer (BC67) described the value of family being present, noting the “availability of family to sit with him as he died over the course of a week. He was hallucinating at the end and regularly falling off the bed if someone didn’t stop him. He needed constant reassurance. We did not think this could be provided by the aged care facility.” After the death of their loved one, carers overwhelmingly reported the helpfulness of their informal support networks, including their family, friends, and church community.

Nonetheless, some carers noted limitations in their informal support networks, particularly when others were uncomfortable discussing death or offered minimising responses. For example, one bereaved carer described the unhelpfulness of “people telling me it will be fine” (BC198), while another reported a pervasive “feeling lonely” (BC227). As one participant reflected, “End-of-life care is not a nice period (and that time period can go on for days). People are unsure of what they can do OR what they should do” (BC316).

Discussion

This study examined 317 bereaved carers’ experiences of end-of-life care in residential aged care in WA, which highlighted how they perceived the degree of person-centred care provided to themselves and residents and the extent to which they felt supported. Significant variability was reported regarding care experiences, consistent with existing literature on end-of-life care in RACHs.²⁵ At times, families felt that not all their needs were met, consistent with lower ratings on Priorities Two (Care is person-centred) and Four (Families and carers are supported) when compared with other priorities in the WA End-of-Life and Palliative Care Strategy 2018–2028, highlighting gaps in relational care, as reported elsewhere.^15,18 However, support received from the bereaved carer’s informal support network was generally viewed as positive, compatible with the high rating of Priority Six (The community is aware and able to care).^15,18

The centrality of person-centred care

Priority Two of the WA End-of-Life and Palliative Care Strategy 2018–2028 highlights the necessity of person-centred care at end-of-life.¹⁹ A central aspect of person-centred care involves recognising and responding to a resident’s needs and values, particularly at the end of life. Although carers reported instances of timely provision of services or valued daily routines, such as accommodating cultural or spiritual needs, these were often described in relation to a specific staff member rather than standard practice embedded into RACHs. Some carers perceived the failure to meet residents’ needs as the person not being seen as a unique individual. In particular, carers of residents with a dementia diagnosis often recounted their experience of substandard care and a lack of attention to individualised preferences. Incorporating reflective questions, such as Chochinov’s²² “What do I need to know about you as a person to give you the best care possible,” can serve as a catalyst for conversations that identify what matters most to residents and help preserve their dignity through the progression of a life-limiting illness.

Symptom management and anticipatory care are fundamental components of person-centred end-of-life care, whereby quality and timely palliative care is provided. However, this study highlighted bereaved carers’ perspectives that care was primarily reactive and occurred with limited family involvement in decision-making. Delays in pain relief, challenges with communication, and having reactive, task-focused care rather than person-centred, proactive care were described by many bereaved carers. This variability in end-of-life care provision is well-documented in existing literature, as RACHs struggle with education and staffing constraints, such as high workload and staff turnover, limited training in palliative care or end-of-life pathways, and low death literacy of staff.^23,24

Carers reported organisational and environmental barriers to delivering person-centred care in addition to the varied levels of skills among staff members. Poor facility design, institutional routines, and a reactive (rather than proactive) response to care needs influenced family perceptions of residents’ quality of life and dying, thus shaping carers’ experiences of care at RACHs. Implications for practice include the need for staff training in palliative and end-of-life care, dementia care, and provision of person-centred care; family engagement and decision-making protocols; and strengthening governance structures to support relational and person-centred models of care.²⁵

Effective communication and meaningful family involvement

Priority Four of the WA End-of-Life and Palliative Care Strategy 2018–2028 highlights the importance of involving families and carers in decision-making and care provision.¹⁹ Findings demonstrate that while some RACHs built collaborative relationships with families, many carers experienced poor information sharing and felt excluded from care decisions. Delayed communication placed considerable emotional and logistical burdens on families, who often had to advocate persistently for symptom management and assistance during disease transition points.²⁵ Exclusion from decisions or lack of timely updates led to carer distress, unresolved questions about end-of-life care, and disenfranchised grief experiences. However, when families felt informed, heard, and supported, this contributed to reduced stress and a sense of trust in the RACH. These findings build on existing literature highlighting the impact of communication on bereavement outcomes of bereaved carers.²⁶ Improved processes for family involvement in decision-making and communication are required.

Additional training for RACH staff on how to discuss residents’ prognosis and disease trajectory, care plans, and what happens at the end of life may improve communication with the resident and their family.^25,27,28 Helping carers and residents understand clinical deterioration and functional decline can assist with preparing them for the dying process and death. Provision of death literacy education and embedding a palliative approach to care and a compassionate communities approach within RACHs offer a promising pathway to better integrate social, cultural, and relational aspects of care.^28,29 A strategy undertaken by Compassionate Communities Australia to advocate for social and system change in RACHs is described in Ng and Aoun.³³

The role of community in supporting carers throughout their caregiving journey

Priority Six of the WA End-of-Life and Palliative Care Strategy 2018–2028 acknowledges the valued role the community plays in end-of-life care.¹⁹ Findings from this study highlight the importance of informal support networks in providing support to family carers during and after a resident’s death in RACHs. Carers often reported receiving more practical and emotional help from community members than from formal services, valuing the personal connection these informal supports provided. Supporting family carers pre- and post-death requires a more sustainable and collaborative model of care that involves supportive informal networks and building referral pathways between RACHs and community-based not-for-profit organisations. This could be achieved through collaborative compassionate communities model of care. This community development approach would assist RACHs in accessing resources available in their local communities. One such model, the Compassionate Communities Connectors approach, emphasises the role of existing social networks in supporting carers both at the end of life and following a death.^29,30 Rather than locating bereavement care solely within the responsibilities of health or aged care services, the compassionate communities model promotes shared responsibility across formal services and informal community networks, aiming to enhance death literacy within the broader population.^31,33

Strengths and limitations

This study is the first to survey and obtain qualitative feedback from a large number of bereaved carers (n = 317) across WA regarding their experiences of palliative and end-of-life care in RACHs. The study sample shared key characteristics with the general RACH population reported in government reports, including resident age, proportion living with dementia, rurality, length of stay, and proportion dying in RACHs.¹⁵

Another strength of this study is the use of free-text questions, which allowed carers to reflect on their experiences. For example, one carer (BC66) reflected, “Thank you for this survey as it has allowed me to put into perspective some of my emotions which I did not realise were not completely settled yet.” While interviews could have provided greater depth of experience, this survey aimed to capture a broader snapshot across multiple RACHs by engaging a larger number of participants.

Nearly half of the survey respondents were university graduates, higher than in the normal population and thus limiting generalisability. The study did not specifically examine coordinated, multidisciplinary aspects of person-centred care, and may not have fully captured input from non-GPs or non-visiting palliative care team members.

Conclusion

Building on the longstanding recognition of both challenges and strengths in end-of-life care within residential aged care, this study gives voice to bereaved carers’ perspectives across the trajectory of decline, dying, and bereavement. Carers described moments of deeply compassionate, relational care, alongside accounts of how structural constraints shaped everyday care practices. The positive role of the community in providing support to carers before and after bereavement was evident. Together, these findings provide insight into gaps in end-of-life care despite clear policy intent and point to opportunities to strengthen relational and community-connected models of support, such as the compassionate communities approach.^29,30

The highlighted challenges in delivering person-centred care and meaningful support within residential aged care are not unique to WA RACHs. These are echoed by the recent report of Inspector General of Aged Care, across Australia, which noted that “efforts to implement recommendations of the Royal Commission have fallen short, in particular, of ensuring access to the social, emotional and spiritual care essential to many people’s wellbeing and their ability to age with dignity.”³² Despite recent funding through the NPA, aligning end-of-life care in RACHs with Priorities 2 and 4 of the WA End-of-Life and Palliative Care Strategy 2018–2028 will require further policy and operational commitment. Sustained investment in workforce capacity, clinical governance, and compassionate organisational cultures is essential to support more consistent and responsive end-of-life care experiences for residents and their families.

A key novelty of this overall study (including the quantitative¹⁸ and the current qualitative articles) is the use of quality indicators from the six priorities in WA’s End-of-Life and Palliative Care Strategy (2018–2028)¹⁹ to understand how care is operationalised. Insights into aspects of care deficiencies and, more constructively, the positive community performance, were made more tangible, as reported in Aoun et al.¹⁸ A compassionate communities approach to care integrated in RACHs does not replace but supplements palliative care services through building community capacity to support carers before and after bereavement, fostering a sense of being genuinely cared “about” in addition to being cared “for.”^18,33 Considerations of sustainability and effectiveness of such an approach are informed by an understanding of local contexts, available infrastructure, and the level of ongoing community engagement. Integrating a person-centred, palliative approach into routine practice is essential for improving the quality and consistency of end-of-life care in residential aged care settings.

Footnotes

Acknowledgements

The research team would like to thank the contribution of the Reference Group members and the organisations and individuals who actively promoted the survey. Special thanks to the bereaved carers who enriched this project with their experiences and insights for improving palliative care services in WA.

ORCID iDs

Julie M. Brose

Yong Hao Ng

Samar Aoun

Ethical considerations

Ethics approval was obtained from the University of Western Australia’s Human Research Ethics Committee (2023/ET000833) in November 2023.

Consent to participate

A participant information form preceded the questionnaire online. Consent was implied by completion of the questionnaire.

Author contributions

Julie M. Brose: Formal analysis; Writing – original draft; Writing – review & editing.

Yong Hao Ng: Investigation; Writing – original draft; Writing – review & editing.

Kirsten Auret: Conceptualisation; Methodology; Methodology; Writing – review & editing; Writing – review & editing.

Bruce Rumbold: Conceptualisation; Methodology; Writing – review & editing.

Samar Aoun: Conceptualisation; Formal analysis; Funding acquisition; Methodology; Writing – original draft; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This evaluation was jointly funded by the Australian Government and End-of-Life Care Programme, Western Australian Department of Health.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Ethical approval precludes the data from being used for another purpose or being provided to researchers who have not signed the appropriate confidentiality agreement. Specifically, the ethical approval specifies that all results are in aggregate form to maintain confidentiality and privacy and precludes individual-level data from being made publicly available. All aggregate data for this study are freely available and included in the article. Interested and qualified researchers may send requests for additional data to the corresponding author*.

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Voices that matter: Bereaved carers’ perspectives of support and person-centred care in residential aged care homes

Abstract

Background:

Objectives:

Methods:

Findings:

Conclusion:

Keywords

Introduction

Methodology

Objectives

Design

Recruitment and data collection

Data analysis

Findings

Participant characteristics

Theme One: Stretched thin – Carer concerns about unmet needs

Theme Two: Navigating the gaps – Carer experiences with end-of-life care

Theme Three: Carers seeking involvement in care decisions – Chasing information, advocating, and wanting to be heard

Theme Four: Navigating decline – Challenges in dementia care

Theme Five: Caring for the carer – The impact of RACH and community support

Discussion

The centrality of person-centred care

Effective communication and meaningful family involvement

The role of community in supporting carers throughout their caregiving journey

Strengths and limitations

Conclusion

Footnotes

Acknowledgements

ORCID iDs

Ethical considerations

Consent to participate

Author contributions

Funding

Declaration of conflicting interests

Data availability statement

References