At home until the end? A qualitative study of experiences of in-home aged care programs in the context of caring for older adults with a life-limiting illness

Data generation

Participants were recruited through an online service called StepUp for Research (Funded by the Australian Government Department of Health and implemented by a dedicated team at The University of Sydney), ⁴⁶ which enables volunteers to self-register their interest in dementia- and/or ageing-related research. Volunteers who responded to a study advertisement were contacted to discuss participation. These individuals initially self-identified as eligible, based on the inclusion criteria provided in the advertisement, and none were excluded. To meet the inclusion criteria, carers were 18 years or over with adequate English proficiency for participation. Current carers were providing unpaid care for someone with a life-limiting illness in the community, who they identified to be within the last 12 months of life and receiving CHSP or HCPP support. Bereaved carers were at least 2 months post-bereavement and had provided unpaid care for someone who received support through one of these programs in their last year of life.

A semi-structured interview protocol (Supplemental Table 1) was developed, based on research objectives. Interviews were conducted online or via telephone by an experienced qualitative researcher (S.I.) with no prior relationship with participants. Prior to interviews, participants were given information about the research and their involvement, including the option to withdraw at any time. All participants provided informed verbal consent, and interviews were undertaken between July and October 2023, audio recorded, transcribed verbatim using a professional service, deidentified and entered into NVivo (Version 12) for analysis. In recognition of their contribution, participants were offered a voucher payment (AU$25). Personal information was managed confidentially according to the study protocol. Ethics approval was granted by the University of Technology Sydney Human Research Ethics Committee (ETH23-8184).

Data analysis

Aligned with a reflexive approach to thematic analysis, researchers actively constructed patterns of meaning in pursuing a coherent thematic conceptualisation. ⁴⁴ Interpretation occurred at the intersection of the dataset, the skills and positioning of researchers, and underlying theoretical assumptions.^47,48 A constructionist lens underpinned analysis, with a primarily inductive orientation to data that utilised semantic and latent coding to explore explicit and underlying meanings. ⁴⁴ Authors approached analysis collaboratively, possessing experience in health and social research, different disciplinary orientations (nursing, social work), and lived experience of caring. These positionalities suggest researchers held both ‘insider’ and ‘outsider’ locations. ⁴⁴ Ongoing discussion facilitated critical engagement with the influence of researcher positionalities upon analysis, supporting richer interpretation of data.^47,48

Initially, two authors (K.B., O.R.W.) verified all transcripts against audio recordings, then independently reviewed two transcripts and inductively generated preliminary codes for team review. The two authors then generated codes across the entire dataset, meeting regularly together and with the team to explore coding. Informed by the concept of ‘information power’, the team determined that the number of interviewees was adequate, and that interview data offered sufficient insights to contribute substantially to understanding the research objectives. ⁴⁹ Considerations that guided this determination included the focused objectives, informed by prior research ⁴³ and the quality of interview dialogue, ⁴⁹ given the interviewer’s research experience. Candidate themes and sub-themes were generated and refined through iterative engagement with the dataset. Any differences in perspective were explored, to support enriched interpretation. Themes, sub-themes and relationships were mapped using ‘MindMeister’ software, alongside the development of narrative description.

Navigational support is central and essential

Features of in-home aged care generated significant system navigation ‘work’, or forms of labour for carers. Navigational support was considered necessary to manage a package, including coordination and guidance regarding interactions with in-home care providers. For many, lacking clarity regarding access-related processes drove navigational support needs. Information online (via the ‘My Aged Care’ website) was often experienced as inadequate or opaque, and progress through assessment unclear. Related navigational work drove confusion and distress:

I am just so shocked. . . I tend to be quite dogged. If I think that I need to do something, or something needs to be done, I will just be really persistent and I’ll get it done at the end of the day. But I have found this process, the bureaucratic process of getting a package, to be absolutely excruciating. . . I’m just so shocked at how many people just don’t do it. They embark on the process of applying and they give up. . . Out of our [support] group. . . I think one other has got a package and the others they’ve either started to apply and given up, or they haven’t embarked on it in the first place, because they’ve just looked at the process and decided that it’s just too hard. (C6)

After approval, challenges in engaging service providers produced information saturation and fatigue, including difficulty identifying appropriate or local providers through the website search tool.

Issues associated with fees and billing perpetuated frustration and confusion. Incorrect charges in some instances necessitated carer advocacy. For some, invoices lacked explanation, or charges did not seem justifiable where carers perceived they were undertaking significant navigational work:

I would sometimes ring them when I got their statement and go, so I read your statement. It doesn’t make any sense. Can you explain it? . . . Then there were little line items like package administration. I’m like, well what’s that for? That’s our fee for administering the package. . . I found that particular fee quite gave me a little jolt. I’m like, well, I think I’m the one who’s administering the package. What have you guys done? (C11)

Ongoing aspects of package management generated burdensome coordination across multiple services (within and beyond aged care), amplifying navigational labour. Several carers valued providers proactively facilitating coordination:

This new person said, yeah, okay, leave it all to me. I will contact [Service] and make all the arrangements and work out how it’s going to be done. She did that in about 15 minutes, and got back to me and said, yeah, right, it’s all set up. All you have to do is phone [Service] and go along and have the talk to them . . . She sorted it, sorted out a problem . . . solved the problem I didn’t know how to solve by talking to [Service]. She understood the issues and then how the agreement was working, which I didn’t. (C2)

As needs increased, some participants described an unmet need for navigational support in relation to transitioning to residential care, which was a particularly distressing and practically challenging period.

Carer positionality shaped navigational support needs. Some carers leveraged forms of economic capital (e.g. access to savings, partial pension) to purchase legal and financial advice. Some carers drew upon forms of cultural capital, or acquired knowledge and resources,^50,51 including previous experiences of working in aged care, the disability sector and local government, as well as past caring experiences. However, this was not consistently sufficient to support system navigation:

[I]n 2021, I resigned from my job as director of nursing in an aged care facility [laughs]. Here I was thinking that would never happen to me, oh my God. I couldn’t work out why I couldn’t get through the aged care system . . . [I]f I couldn’t understand, what was happening for all these other poor people out in society? My doctor, he said, well [Name], if you can’t do it, I can’t do it, how’s everybody else surviving? (C4)

Responsivity and flexibility are essential to meeting needs and preferences

Responsivity and flexibility concerned the extent to which carers perceived features of packaged care reacted appropriately and efficiently to support needs and preferences. Experiences of delays in accessing care were common, with lengthy wait times for assessment and approval that were inappropriate given significant needs of some care recipients. One carer purchased private care while awaiting packaged care, and delays fuelled distress:

There’s so much money flying around. None of it’s going to where it needs to be, on the ground in the lounge rooms and kitchens of the people who need the support. What is going on? How do we bump up the ladder? She [at assessing organisation] said, I’ve heard your frustration for the last six, eight, nine months. I’ll give it to you straight. . . Let’s say there’s 100,000 packages available. . . and they’re all being used right now. One will become available when somebody dies, and then your Mum will move up a spot. . . I just collapsed. I just thought that was, oh my God. It’s like being on a transplant list. Yes, that was just terrible. (C10)

Particular features of service delivery were experienced as inefficient and inflexible. For instance, where service provision duplicated tasks carers were capable of, or where patterns of service provision were untailored and failed to support time for carers to manage other priorities. Service delivery was at times viewed as poor value, including where care was not informed by basic knowledge of the care recipient to meet fundamental needs.

As needs increased, flexibility in coordination and administration of packages were appreciated by carers. Many carers valued flexibility to accumulate funding, where packages were not fully utilised. Accumulated funds enabled equipment purchases, supported increasing needs, or were anticipated as valuable to support future needs. However, where existing care became inadequate due to increasing needs, delays in reassessment and accessing higher levels of care had evident consequences. In one situation, reassessment was abandoned as needs increased before this could be arranged. Another care recipient experienced a stroke while awaiting a Level 3 HCP, with approval coinciding with entry to permanent care. Two carers paid for private care while awaiting higher-level packages:

She was put initially on the [Level 3] care package and there was a 12 month wait for that. So, she went on the waiting list for three months. . . By the time that came through she was . . . reassessed again at Level 4. So, she was back on the waiting list for the Level 4 care package. . . In the meantime, we privately paid carers. (C7)

In contrast, two carers assumed that future reassessment for higher-level packages would be timely, and three were hopeful higher levels of care would assist to adequately support future needs at home. However, these assumptions were not mirrored in reported experiences where needs had already increased.

Some carers generated individual solutions to address unmet needs. Four carers provided examples of advocacy where needs were intensifying. With a preference to avoid residential care, one carer perceived her advocacy for expedited services for her father had significant impact: ‘I don’t even want to know what the quality of life for him would’ve been if I didn’t know that and I didn’t insist on that’ (C14). The need to continue in paid employment was also essential for some carers, although packaged care was experienced as not necessarily able to flexibly enable this need:

Now, if you work full-time . . .You’ve got two hours only where you get paid care, so you’ve got to work out the other seven hours with a. . . late stage dementia patient. It’s just impossible. . . you either give up your job completely and look after her full-time, which was not a fit for me, . . . My stress was coming from not being able to go to work with no one to care for my Mum. (C7)

Needs are complex and require specific knowledge and skills

Care recipients presented complex needs perceived to require particular knowledge and skills to support nuanced care at home. Carer stress was compounded where assessment was not experienced as dementia-informed. For example, where assessors without a sound understanding of dementia dismissed the carer’s perspective and acted on inaccurate commentary from care recipients, services were delayed.

Several carers emphasised the importance of care workers possessing dementia- and discipline-specific knowledge and skills. This included capacity to manage challenging behaviours compassionately, underpinned by in-depth knowledge of the care recipient; characterised as intricate work:

They need to be well trained in dementia. They need to be very patient, they need to be respectful. . . they need to know that they might need to write things down, they’re going to have to keep repeating things . . . they have to sort of somehow give the illusion of allowing the person to be independent but – maintaining oversight, and being vigilant about things going wrong, because things do go wrong, and they need to be conscientious about making sure that the person is safe, and that they feel safe. Then they also need to be skilled in mood management, as well. They’ve got to have the skills of a mental health nurse in many respects. . . . So yeah, it’s a high bar. (C6)

Some carers valued forms of disciplinary expertise (e.g. diversional therapy) in meeting dementia-related needs. Noted unmet needs included more intensive clinical and allied health support (e.g. occupational therapy). Carers also valued skilful provider coordination regarding complex dementia-related needs. Provider ability to facilitate continuity of care was considered highly important by several carers, although perceived to be undermined by staffing constraints. One carer noted the way in which a provider matched workers with the care recipient, given their understanding of dementia and this individual.

As needs increased, several carers experienced discussions informed by knowledge about end of life. However, these conversations were facilitated by residential care staff, and medical and nursing staff in hospitals. Discussions explored prioritising quality of life and symptom management, and appeared to support decision-making regarding end of life. While most care recipients had no contact with specialist palliative care services, three reported receiving palliative care, although not at home. Two carers described receiving palliative care in residential care prior to the death, and one carer described a brief admission to an inpatient palliative care unit prior to transfer to residential care. Palliative care within residential care was experienced as involving skilful communication and support. One carer reported that an ‘in-reach’ palliative care team (including nurse practitioners) enabled care guided by the advanced care directive, promoted General Practitioner (GP) linkage, mitigated transfer to hospital and facilitated confidence about care provision. The other carer indicated that palliative care for her mother in residential care ensured that her father (living in same facility) could be present at end of life, as per their wishes. Despite believing that this setting was appropriate, this carer expressed concerns that pain was not consistently managed in this setting.

Some carers were aware of signs that would indicate increasing needs in future, potentially making care at home unsustainable (e.g. incontinence, behavioural issues), and prompting reflection on the constraints of packaged care. Where a care recipient had transitioned to permanent care or hospital, four carers felt that complex needs could not possibly be supported through existing levels of packaged care. For example:

She’d agreed that she can’t stay at home any longer, even with all of this high level, Level 4, care people daily. There were people coming in the morning for medication, shower, housework, shopping and then somebody would return in the evening to make sure medication. We’d gone to that level, but she just wasn’t able to stay at home anymore. (C11)

Additionally, carer capacity to anticipate and plan for increasing needs varied, with potential consequences for meeting complex care at home. Some carers had engaged in legal, financial and practical planning (e.g. home modifications), while others highlighted associated challenges and fear:

Because it’s not only a progressive, degenerative trajectory that you’re on, but it also changes from day to day. . . . . I find the future frightening, and it’s very difficult when you’re setting up a household to know what’s appropriate, and how long that’s going to be appropriate down the track in terms of needing residential support as well. (C6)

Relational orientation supports connection and continuity

Relationally-oriented approaches to packaged care were characterised by trust and knowledge of the care recipient, which facilitated consistency, familiarity and routine; highlighted as vitally important by most carers. The quality of connection with care workers appeared to promote comfort and reassurance. Relationally-oriented workers anticipated needs, interacted empathically and sensitively mitigated issues through individualised engagement:

She had this – had the right way of treating her. Not talking down to her or being overly officious in anything. You know . . . more friendly. Come on, time to go and have a shower now. Come on, we’ll get your clothes off. She sort of more, I suppose – [care recipient] took more to that approach because it was more on a friendly tone or something she could relate to. (C8)

Unreliable or impersonal communication about care was viewed to undermine continuity of care, and inconsistently scheduled care workers eroded a sense of familiarity and trust, with one carer stating “If we want people to stay at home, we need consistency” (C4).

Respite, or services that facilitated ‘time out’ from caring tasks, were particularly valued. These services supported social interaction and well-being activities, family relationships and capacity to continue caring. For one carer, such services enabled meaningful presence in the “last stages” at home:

It gave me more time to be able to be with them rather than having to race around for them. To me, it gave me – like I didn’t have to go and do Mum’s shopping. I could just sit with them. . . . just checking their overall wellness, I suppose, to try and help them in the last stages of being able to live at home. (C9)

Five participants discussed barriers to accessing appropriate respite, including the scarcity of respite beds in residential care and the lack of available respite in times of crisis.

Carers drew upon forms of social capital that supported a sense of connection and potentially sustained care at home. For some, formal resources (e.g. GPs) facilitated needed referrals to geriatricians. Informal networks (e.g. family, friends) provided emotional and practical support (e.g. crisis assistance, informal respite), and along with carer support groups enabled information sharing about navigating the aged care system. However, several carers noted the limits of informal networks, which were not necessarily experienced as supportive, or consistently available.