‘Where’s the Support for Us?’: Exploring the Lived Experiences of Significant Others Who Care for People with Disability in Australia

Abstract

Significant others—family members, friends, and informal carers—play a vital yet underrecognised role in supporting people with disability in Australia. This study aimed to explore their lived experiences and identify systemic barriers impacting their well-being and caregiving capacity. A total of 188 significant others participated in a statewide survey, co-designed using inclusive research principles. Quantitative and qualitative data were collected and analysed collaboratively, using an a priori coding framework adapted to new themes. Four key findings were described: the joy and meaning found in caregiving; the overwhelming burden of navigating fragmented systems; the erosion of carer well-being due to financial, physical and emotional strain; and the urgent need for systemic support including respite and equitable access to services. Participants emphasised that caregiving itself was not inherently burdensome, rather, the lack of formal support and recognition creates unsustainable conditions. These findings highlight the critical role significant others play in sustaining Australia’s care economy and underscore the need for disability-inclusive policy reform. Strengthening support systems and embedding lived experience into reform and policy design are essential to ensuring the long-term sustainability of informal care and the rights and well-being of both carers and people with disability.

1. Introduction

In Australia, caregiving by significant others of people with disability—including parents, siblings, spouses, other family, friends, and informal support networks—plays a significant yet often overlooked role in the health and well-being of those they care for. They frequently serve as the primary or sole source of support, with 75.7% of the 3.2 million Australians with disability relying on informal caregiving [1]. The support provided by significant others of people with disability is a vital asset to Australia’s healthcare system, filling gaps left by inadequate formal services and government funding shortfalls [2]. Significant other contributions generate substantial economic savings and merit recognition on par with formal health services [3,4].

Despite these critical contributions, the efforts of significant others of people with disability are often underappreciated, and their lived experiences remain poorly understood. Exploring their perspectives is required to develop effective policies that recognise and sustain this indispensable workforce. To address this gap, which is essential for ensuring the sustainability of the care economy, the present study aimed to explore and amplify the lived experiences of significant others who care for people with disability in Queensland, Australia. Specifically, the study aimed to answer the research question, what is life like for significant others of people with disability across Queensland?

The challenges experienced by significant others are complex. Many significant others report difficulty balancing their caregiving role with other aspects of their lives. The prevailing discourse on significant others focuses on the negatives of caring, including heightened stress, depression, and poorer quality of life and well-being [5,6,7,8]. Financial insecurity is another key focus, resulting from unpaid work or reduced capacity to engage in paid employment. Illness and ageing are further challenges for significant others which impact their longevity as caregivers [2,9]. Very few studies highlight the positives of caring roles, including increased self-esteem and a strengthened sense of purpose [10,11,12,13].

Of the many challenges experienced by significant others, the lack of adequate support, such as respite care and financial assistance, are most frequently mentioned [14,15,16]. A lack of adequate support can exacerbate systemic inequities and create further disconnect between the contribution of significant others to the healthcare economy and the resources available to them [16]. Indeed, insufficient support can lead to increased financial, physical, and psychosocial strain, potentially diminishing quality of care [17,18]. Conversely, access to support can enable significant others to better manage the challenges they face and deliver higher-quality care [3,19].

Developing better support for significant others of people with disability requires lived experience research that centres their perspectives in inclusive, participatory practices [20,21]. However, contemporary research rarely focuses on significant others as a distinct group and more often includes them in research focused on the people for whom they provide care and support [22]. Research focusing on significant others lived experiences and related solutions, is required. Importantly, this research should move beyond the lens of caregiver burden [6,7,8] to recognise the nuanced caregiving experience which encompasses both positive and negative impacts all parties involved. By actively engaging significant others in research, we improve the quality and relevance of findings and create empowerment opportunities [20].

2. Methods

This paper presents qualitative and quantitative findings on significant others of people with disability, that form part of a larger research initiative, The Voice of Queenslanders with Disability Report 2024 [23], which focuses on baselining inclusion and what life is like for people with disability and their support networks in Queensland, Australia. The research was grounded in the policy priorities outlined in Queensland’s Disability Plan 2022–2027: Together, a Better Queensland [24], which provided the strategic framework for the study.

The Voice of Queenslanders with Disability initiative assessed Queensland’s progress across the seven outcome areas specified in the Disability Plan: (1) employment and financial security; (2) inclusive homes and communities; (3) safety, rights and justice; (4) personal and community support; (5) education and learning; (6) health and well-being; and (7) community attitudes. To achieve this, the Queensland Government partnered with Queenslanders with Disability Network and Griffith University to design and implement a state-wide survey.

2.1. Inclusive Research Design

A participatory approach ensured that people with lived experience of disability were central to the study’s design and implementation. The research team used the Dignity Project Framework for Extreme Citizen Science [25], a five-phase framework rooted in citizen science principles. This approach prioritises the expertise of lived experience, fostering co-leadership and shared decision-making throughout the research process. By emphasising inclusivity and empowerment, citizen science facilitated diverse contributions and underscored the importance of the community in driving and shaping research outcomes.

The Dignity Project Framework [25] includes four guiding principles: (1) a human rights perspective on disability; (2) removing barriers to participation; (3) promoting accessibility and inclusion; and (4) maintaining transparency in collaboration. These principles were integrated into every phase of the study, from survey co-design to data interpretation.

2.2. Co-Design and User Testing

During the initial design of the research, a reference group comprising people with disability, government representatives with and without disability, researchers with and without disability, and members of the Queenslanders with Disability network co-designed three surveys tailored to different audiences: people with disability, significant others, and disability support organisations. This paper focuses exclusively on data from the survey for significant others. To refine the survey, user testing was conducted with people with diverse disabilities and experiences, including significant others. The iterative process enhanced survey accessibility and clarity.

Seven citizen scientists with disability, including one who was a significant other, were recruited through an expression of interest process. Citizen scientists who had completed or were enrolled in Griffith University’s co-designed “Citizen Research Essentials” training and brought lived expertise to tasks such as refining survey content, communication strategies, and recruitment approaches [25]. Their contributions were supported through remuneration and ongoing collaboration with the research team.

2.3. Recruitment

Convenience sampling, a non-probability technique where participants were recruited based on their accessibility, was used to recruit significant other participants. The dissemination strategy for recruitment was extensive and robust, leveraging state-wide disability networks, disability peak bodies in Queensland, Queensland Government networks and databases, and citizen scientists in their own communities. The method of recruitment did rely on participants self-selecting into the study. While this paper presents the findings of the significant other survey, the main goal in the recruitment process was to target a larger proportion of participants with disability and as such, resulted in lower numbers of significant other participants. While the recruitment strategy was designed for wide dissemination across Queensland, the convenience sampling method resulted in a self-selected sample. The final sample was predominantly female (90.4%). This significant gender imbalance is likely a reflection of two factors: the social reality of informal care in Australia, which is a highly feminised role, and a potential self-selection bias where women may be more likely to respond to survey research on caregiving. While not statistically representative of all significant others in Queensland, the sample provides critical insight into the experiences of the primary demographic undertaking informal care. Furthermore, of the seven citizen scientists who assisted with recruitment, five were women recruiting from their networks, which also could have contributed to a sample that was predominantly women.

2.4. Data Collection

Survey data were collected digitally via the Inclusive Futures Hub, an accessible platform with software by Engagement HQ that is Web Content Accessibility Guidelines 2.1 (WCAG 2.1) compliant. The survey ran for seven weeks from January 2024 until March 2024. Participants could complete the survey online, through assisted completion, or via guided interview. The survey question opened with two questions about informed consent, which was extended to include future use for publication and trends analysis.

Questions included demographic information and open-ended formats, enabling respondents to share quantitative and qualitative insights about their experiences. Demographic questions included gender identity, age, cultural background, and education. Significant others were also asked a series of questions about the management and makeup of their life, as described in

Table 1. Indicative Questions about Management and Makeup of Life.

Questions	Response Options
1. Are you currently employed?	Yes
	No
2. If you are not currently employed, please select what best describes your situation	Actively looking for work
	Cannot or do not want to work
	Volunteering
	Studying
	Parenting or caring for another person
	Gig economy
	Financial support from family and friends
	Other
3. If you are employed, how are you employed?	Full-time
	Part-time
	Casual
	Freelance or self-employed
	In multiple roles
	Gig economy
	Other
4. What is your household income?	Under $25,000
	$25,000 to $49,999
	$50,000 to $74,999
	$75,000 to $99,999
	$100,000 to $149,999
	$150,000 to $174,999
	$175,000 to $199,999
	$200,000+
5. How many people, including you, live in your household?	1
	2
	3
	4
	5
	6
	7
	8
	9
	10 or more
6. How many people, including you in your household, have disability?	0
	1
	2
	3
	4
	5
	6 or more
7. Is your family member or person with disability you support under 18 years of age?	Yes
	No
8. How many hours per week are you providing unpaid support?	No hours
	1–5 h
	6–10 h
	11–15 h
	16–20 h
	More than 20 h
9. In which areas do you help the person(s) you care for?	Jobs, money and employment
	Homemaking and housekeeping duties
	Education
	Social and community participation
	Self-care (showering, bathing, dressing)
	Medical or therapeutic care
	Mobility
	Communication
	Transportation
	None of the above
	Other

. Participants were then asked about what it was like to be a significant other of people with disability in Queensland, as described in

Table 2. Indicative Long-Form Questions about What It Is Like To Be A Significant Other/Carer of Person with Disability in Queensland?

Questions
1. What is going well for you? What is going well for the person/s you care for?
2. What is not going well for you? What is not going well for the person/s you care for?
3. What have you noticed in terms of support experiences for the person/s you care for (e.g., access, quality and outcomes)? What could improve service experiences?
4. What are you looking forward to for the person/s you care for?
5. What are you worried about for the person/s you care for?

. The survey contained upwards of 37 items including 0–21 additional qualitative questions asking what was going well, what was challenging, and potential solutions for each of the seven aforementioned outcome areas. Significant others could choose as many or as few questions as they wanted, in alignment with the principles of the Dignity Project Framework to accommodate flexibility in data collection [25].

2.5. Data Analysis

Demographic data were analysed descriptively, with patterns and trends examined across the demographic variables. The study intentionally used descriptive statistics rather than inferential analysis primarily due to the use of a non-probability convenience sampling means that findings cannot be statistically generalised to the entire population of significant others in Queensland. Inferential statistics are best suited for probability samples. Furthermore, the aim was an exploratory study to describe the rich lived experiences of this sample, rather than to test pre-defined hypotheses. As such, descriptive statistics serve the crucial function of characterising the sample and providing quantitative backdrop for the core qualitative themes.

Qualitative responses were coded in NViVo by both A.Y. and K.C. using an a priori coding framework established during the 2023 survey. The framework was iteratively adapted to incorporate new themes from the 2024 data. The coding framework included high level themes across all outcome areas and was initially sorted based on content nodes by both A.Y. and K.C. Both tested the coding framework and iterated in a collaborative NViVo file. Consensus was sought with EK where queries emerged. The codes were then further analysed thematically to higher order themes across the significant other sample and in the context of the broader participant sample, which included people with disability and organisational representatives. Inter-coder reliability was not assessed although themes were reviewed and revised by C.M. during the preparation for publication. While the qualitative analysis was robust, it is important to note that the analysis was conducted on open-text responses, which varied in depth and length across participants. The analysis process involved collaborative input from researchers and citizen scientists, ensuring diverse perspectives informed the findings. It also involved regular discussions with key stakeholders across Queensland Government and broader project staff.

2.6. Ethical Considerations and Recruitment

Ethics approval was granted by Griffith University’s Human Research Ethics Committee approval (GU2022/909) and conducted in accordance with the Declaration of Helsinki. Recruitment leveraged social networks and databases of research partners, supported by citizen scientists who engaged their communities using approved communication strategies.

2.7. Participants

Eligible participants included any adult living in Queensland who self-identified as a significant other providing support or care (paid or unpaid) for a person with disability who also lived in Queensland. Informed consent was obtained in written form via the survey through two questions: one explicitly asking for consent with a yes or no option and a second asking about the purpose of the survey.

A total of 188 significant others participated in the survey. The majority of participants identified as female (90.4%). While most significant other carers were parents of a person with disability (child or adult) some significant others were providing care for a parent or older family member, and some were spouses or friends. It is key to mention that significant other participants often had disability themselves, with a high prevalence of Autism Spectrum Disorders (ASD) and Attention Deficit Hyperactivity Disorder (ADHD), both of which are genetic. While the sample size was not necessarily reflective or representative of all significant other carers of people with disability in Queensland, it did provide a strong baseline for perspectives. Demographic breakdown of the 2024 participants with disability are included in

Table 3. Sample Demographics.

Demographic	Sample Breakdown
Average Age	52.6 years
Gender
Male	18 participants
Female	170 participants
Non-binary	0
Intersex	0
First Australian
Yes	7 participants
No	181 participants
LGBTQIA+
Yes	8 participants
No	174 participants
Location
City	123 participants
Regional	49 participants
Rural	11 participants
Remote	5 participants
Disability Identity for people they care for (can select multiple)
Chronic illness/pain	36 participants
Cognitive	59 participants
Intellectual	67 participants
Psychosocial	46 participants
Neurodivergent	97 participants
Neurological	46 participants
Physical	68 participants
Sensory	78 participants
Other	19 participants

and full sample details are published in the Voice of Queenslanders 2024 Report [23].

3. Results

Significant others, viewed their roles as vitally important and felt that they were needed to provide the bulk of care, filling in critical service gaps for the people with disability they supported. Most participants (90.4%) reported living with 2–5 people in their household, with 1 person with disability (56.4%) who was often under 18 years of age (56.1%). However, a substantial number of participants (36.8%) reported supporting between 2–4 people in their household with disability. In some instances, these significant others were providing care for multiple children, some of whom had disability support funding via the National Disability Insurance Scheme (NDIS), and some who did not. These participants felt an increased pressure to deliver an equitable quality of life and care for their children but found this difficult when one child had more funding than the others. While participants shared diverse perspectives and circumstances, four key themes were identified during analysis about their experiences: (1) the joy in caring; (2) overburdened significant others: navigating a systemic crisis; (3) The erosion of significant other well-being: mental, physical and financial strain; and (4) the critical need for systemic support: gaps in respite, formal services, and equitable access. It is important to note that these findings are shaped predominantly by the perspectives of women living in urban areas. As such, they offer a deep and valuable understanding of the caregiving experience for women in Queensland, though the perspectives of significant others who are men is largely absent in this dataset.

3.1. The Joy in Caring

Navigating a fragmented formal support system and the pervasive lack of quality supports for people with disability created tension, stress, and ongoing negative impacts on mental health and well-being. However, despite the challenges, nearly all participants found immense joy, purpose and fulfilment in their roles. As one participant shared, “we enjoy every day […] there is much to be grateful for” (FC197), reflecting the deep appreciation many significant others felt for the moments of love and connection they experienced while caregiving. For some participants, caregiving was a source of personal satisfaction, expressed by one participant who said, “I get the satisfaction of helping someone I care about” (FC122), while another emphasised the pride and privilege of caregiving, stating, “I love my family and am grateful for the privilege it is to be a parent and am so proud of my son” (FC152).

Participants emphasised the importance of the deep emotional bonds and connection formed through caregiving, with one participant highlighting, “we have a close bond and I get to give him the attention he needs” (FC143). For many participants, seeing the person with disability that they support grow and thrive was deeply rewarding, as noted by one participant who said, “it is rewarding to see her thrive and grow and overcome adversity” (FC121). Others expressed the sheer joy of their role saying, “my child brings a lot of joy” (FC196) and that their life was filled with “joy, love, and acceptance” (FC27).

Beyond personal connections, participants also found meaning in creating stability and ensuring the people with disability they support had access to all the services and supports they required to live their best lives. Participant FC12 said, “I’ve worked very hard to help ensure that my daughter has access to the good things of life” while participant FC118 found comfort in “knowing we are safe and have a good routine and support.” Participant FC133 shared that the person they support “is a beautiful child with a kind heart” who brought them joy, kindness and goodness every day.

Together, the reflections of participants illustrated the profound meaning and joy that caregiving for people with disability holds for many significant others. While the role comes with challenges, it also brings an enduring sense of joy, love, connection, and purpose. Through these moments of personal connection, joy, and stability, participants found strength in their relationships and in the knowledge that they are making a difference in the lives of the people with disability that they cherish.

3.2. The Overburdened Significant Others: Navigating Fragmented Systems

Significant others found their caregiving responsibilities expanding well beyond traditional duties as they navigated fragmented support systems, placing an overwhelming burden on them. Many participants reported their roles had grown to include managing complex administrative tasks, advocating for the people with disability they support, and coordinating essential services, all while juggling employment, personal responsibilities, and an attempt to have a life beyond caregiving. With 63.3% of participants providing more than 20 h of unpaid support per week—and only 4.3% providing no unpaid support—it is apparent that significant other informal support has become an unpaid, full-time commitment for many. Most participants found their caregiving role to be stressful (43.1%) and very stressful (30.9%) but noted that this stress was often a result of external pressures, systemic barriers, and lack of adequate formal support for the person they were supporting. Participants frequently described spending extensive time handling bureaucratic processes, such as liaising with schools, carers, and service providers, often with little assistance. As one participant explained, they had “too much to do. Too much repetition and paperwork” and spent too much time “liaising with schools, carers, systems, etcetera” (FC119). The overwhelming administrative load detracted from participants ability to focus on the more personal, essential, and joy- producing aspects of caregiving for the person with disability they support.

For those navigating Australia’s formal support systems, particularly the NDIS, the complexity of funding applications, annual reporting, and service coordination were sources of ongoing frustration. One participant captured this struggle succinctly, describing an “overwhelming number of administrative tasks” (FC110), while another shared, “I am a strong advocate for them and make sure they get the support they need” (FC179). The increasing duties combined with the fragmented systemic barriers left many participants feeling unsupported and stretched thin, needing to act as both a caregiver, advocate, a system navigator, and earn money, which amplified participants pervasive sense of overwhelm, chronic stress and exhaustion. One participant captured the toll that fragmented systems place on significant others stating, “everything is a fight. You have to fight for inclusion in sport. You have to fight for inclusion in schools. You have to fight for accessibility. You have to fight for everything” (FC33). In response, participants called for greater recognition of their contributions, emphasising the critical role significant others play in sustaining Australia’s healthcare and disability support systems. One participant stated, “care for the [informal] carers. We’re under a lot of pressure and without us, if we abandoned our [family members with disability] due to the stresses, it would cost the government a hell of a lot more to provide the same level of care” (FC19).

The findings and stories shared by participants emphasised the urgent need for reform in Australia’s disability support systems. The burden placed on significant others did not stem from the act of caring itself, but rather from the failure of formal structures and systems to provide adequate, accessible, and efficient support. Addressing the systemic barriers that contribute to significant other overwhelm—such as administrative overload, financial insecurity, and fragmented service coordination—would not only improve the well-being of significant others but also ensure that people with disability receive the quality care and support they deserve.

3.3. The Erosion of Significant Other Well-Being: Financial Strain Impacting Mental, Physical Health and Well-Being

The cumulative impact of inadequate formal support systems, the complexities of navigating them, and the financial constraints associated with caregiving have placed significant physical and psychological strain on significant others. Many participants described experiencing extreme burnout from years of caregiving, often without adequate assistance. One participant captured the overwhelming nature of these intersecting challenges, stating, “I am burnt out from years of caring for two children with disability and advocating for them in the health and education sectors” (FC66).

The lack of reliable, quality and safe formal support options, for example, support workers, required participants to rely on additional informal networks, such as parents, siblings, and extended family members, to help with the person with disability and their daily needs. However, these supports were not always available, as one participant noted “… no help from family” (FC121) and should not be required for people with disability and significant others to live their best lives.

In addition to the logistical burden and feelings of overwhelm impacting participants, many faced significant financial strain. While 33.5% of participants reported annual household incomes between AUD100,000 and AUD200,000,a substantial proportion earned considerably less, with 11.3% making between AUD50,000 and AUD99,999 and 19.7% earning under AUD50,000 per household. Many participants found themselves supplementing the costs of disability-related care out of pocket as “funding [is] not covering where the actual costs of disability lay” (FC29), requiring significant others to cover expenses such as medications, therapies, and essential supports not adequately funded by government schemes. Beyond financial impacts, some participants also reported experiencing stigma associated with receiving government assistance, with one participant explaining, “there is a lot of stigma relying on government payments […] I don’t have any superannuation and likely never will because I am an unpaid carer” (FC89). These financial pressures compounded the stress of caregiving, leaving many significant others feeling undervalued and struggling to secure long-term stability for their families and themselves.

Financial hardship was a key driver of the impacts experienced by participants, particularly as they struggled with the rising cost of living, insufficient formal financial supports, and employment instability. One participant expressed frustration at how financial pressures limited their ability to meet their own needs and the needs of the person with disability they support, stating, “housing costs have doubled, we only had small increases federally from Centrelink […] there is no money left over after housing and bills and doctors to do anything” (FC29). Another participant added, “Cost of living is too high and not enough [income] support for extra activities required for a person with disability” (FC19). The inadequacy of the Disability Support Pension (DSP) was a recurring concern, with one participant stating the person they support experienced “long-term poverty due to the insufficiency of the DSP to meet the basic cost of living” (FC63), which meant that costs were then passed on to the significant other to fill the gap.

Even amongst participants who considered themselves financially stable, nearly all expressed concerns about the unpredictability of formal financial supports, viewing them as an additional source of stress. Some participants lived in “constant fear of funding cuts” (FC11), while others questioned that “support continues to get more expensive. What happens when we can no longer afford it?” (FC68). More than two-thirds of participants (64%) received no government support, increasing feelings of inadequate financial support. The financial insecurity extended beyond government assistance, as participants found themselves forced to make difficult trade-offs between employment and their role as a significant other caregiver. One participant captured this tension, stating, “it is frustrating that people who work don’t get any assistance. Being in a cost-of-living crisis as a single parent [of a child with disability] with no help is stressful […] the only way for me to be able to afford additional therapies is to stop working” (FC12).

Many participants reported that their caregiving role had significantly disrupted their employment due to a lack of flexibility in most jobs. Many participants were not in the workforce, with 56% noting they were unemployed, and one participant said, “I can’t work due to my full-time caregiver responsibilities” (FC5) and another explained, “employers, including government, do not understand the additional work—physical, emotional and mental—and the impact of that” (FC116). Numerous participants called for more flexible and supportive work arrangements, recognising the necessity of balancing part-time employment options with part-time caregiving responsibilities. As one participant explained, “being able to work part-time from home, I am able to be flexible with my schedule as I support my daughter with her needs” (FC16). Other participants emphasised that employment was not just a financial necessity, but also a source of personal fulfilment, stating “I need to work for financial reasons and to keep my brain alive, but can’t find part-time work for an experienced professional woman” (FC66). Despite this, the scarcity of flexible employment options meant that many significant others were effectively locked out of the workforce, further exacerbating financial hardships and negative mental health impacts. Of those who were employed, 53.8% were employed full-time and 29.5% were employed in part-time roles. These significant others, while appreciative of their employment opportunities, were experiencing detrimental health and well-being impacts, including the need to balance significant caregiving responsibilities with their professional life. Exhaustion and high stress levels were frequently mentioned.

Declining health and well-being were particularly evident among participants who also identified as people with disability and who lacked strong informal support networks or received minimal financial assistance for themselves. As one participant explained, “my health […] suffers from this [extended caring]. Life is a struggle, and emotionally, I am depressed, anxious, trapped and lacklustre” (FC60). Despite participants recognising their own deteriorating well-being, many significant others continued to deprioritise their health, often placing the needs of the person with disability they supported above their own. Financial barriers, time constraints, and social isolation were mentioned by participants as limiting significant others’ ability to access healthcare or engage in self-care practices. One participant described the consequences of this impact: “My health is neglected. I have lost [the] ability to self-care, and this has [meant] I haven’t been able to see a GP in over 18 months. I have been in pain and menstruating for 426 days without a break, and I can’t get time or when I do, I don’t have money to follow up on my own health issues” (FC192). Another participant shared, “I have developed numerous chronic health conditions and chronic pain conditions from the stress of what I do” (FC89).

Ultimately, the increasing role of significant others and inadequate financial and employment supports left many participants feeling vulnerable. One participant encapsulated this reality: “As a carer, I am financially vulnerable—limited super, nearly no income, children to support, forced homeschooling, renting because I have no reliable income to buy. And my children also miss out now and in the future as my family doesn’t have the assets of one where both parents can work and have reliable income” (FC66). These findings underscore the interconnected nature of inadequate formal supports, financial instability, and significant mental and physical strain on caregivers. Without comprehensive policy interventions to address these challenges, burnout remains an inevitable reality for many significant others. Addressing these systemic shortcomings could provide significant others the stability needed to maintain well-being.

3.4. The Critical Need for Systemic Support: Gaps in Respite, Formal Services, and Equitable Access

The lack of quality, reliable and accessible support services was a critical concern for many participants, highlighting a systemic failure that left significant others feeling unsupported. One participant captured this frustration saying, “it would be really, really nice if someone actually noticed the carer sometime. Maybe noticed that it is hard. Maybe noticed that we are trying. Maybe noticed that we are stressed, struggling, exhausted and have no options and no way out” (FC47). The availability of respite services was a particular concern, with participants noting that the absence of appropriate options significantly impacted their ability to effectively balance their caregiving responsibilities and avoid burnout. Even for participants and/or the people they support receiving formal financial assistance, respite remained difficult to access. One participant explained, “I am extremely overwhelmed caring for my two children [with disability] and husband with neurodivergence, and although the children have NDIS supports, it does not support me [in the way of respite] to prevent carer burnout” (FC82).

Difficulties in accessing qualified and reliable formal support services were also frequently cited by participants. Some participants described negative experiences with support workers, particularly in relation to service quality and reliability. One participant reported, “support workers are only interested in money, not quality of service. One even abandoned my son without notice” (FC41). Challenges in securing appropriate support were compounded in regional and rural areas, where a shortage of trained professionals limited options. As one participant noted, “rurally since NDIS came in, there seems to be a bunch of unskilled 19-year-olds charging AUD90 an hour to play playdough, or if you can find a decent service provider, the agency they work for is ripping them off and they don’t stick around for too long” (FC126). The lack of reliable support placed strain on significant others, many of whom expressed the need for respite services to reduce the intensity and impact of their responsibilities. One participant stated, “we need someone skilled in home from time to time to help us all manage his condition, without having to sell the house to be able to afford it” (FC170).

Other than concerns about service quality, participants also reported difficulties in accessing support due to geographic disparities. Many described a widening gap in service availability between urban and regional areas, with some indicating that the lack of services and affordability impacted on where they chose to live. For example, one participant noted that “living rurally [where rent is cheaper] to afford to live, [meant] sacrificing access to services” (FC126). Participants from regional and remote areas frequently noted a lack of disability advocacy and support services available, describing the sector as “currently and historically chronically underfunded” (FC98). Other participants reported limited options for health and allied health services, which led to reliance on providers with inconsistent service quality. “Rurally, I have access to one physio [and] they have repeatedly ripped off [the] NDIS and charge an hour [for] 40 minutes [of] actual work. But [with] no alternative [I] find myself begging for subpar support” (FC126), illustrating the challenging circumstances and prioritisation of decisions that significant others tackle daily. These challenges highlight the need for more equitable distribution of services and funding to ensure that people with disability and significant others in regional areas receive the supports they require.

Education-related barriers and supports were another key issue for participants, particularly in finding appropriate schooling options for the people with disability they support. Some described difficulties in balancing work responsibilities with the need to supervise education, with one participant stating, “me having to supervise my child’s distance education whilst trying to work” (FC29) and another noting “distance education due to schools not wanting to allow her access” (FC166). For some significant others, securing suitable schooling required relocating, which introduced additional financial and logistical challenges. One participant explained, “it is difficult to find a suitable school. A lot of time was spent researching and talking to schools in the area. We have had to move to find a school for my son” (FC17). Mainstream schooling options were also perceived as limited, as summarised by one participant, “mainstream schooling options are reduced due to lack of support at state schools and lack of acceptance at private schools” (FC33).

Finally, many participants expressed concerns about the sustainability of their roles, particularly as they aged or experienced their own health-related challenges. While some participants reported a strong commitment to providing care, they also acknowledged the need for long-term solutions to ensure a continuity of care for the people with disability they support. These concerns were linked to broader issues aforementioned regarding the availability, coordination, reliability, and quality of formal support services.

4. Discussion

This study sought to explore the lived experiences, needs and preferences of significant others who provide support or care (paid or unpaid) for people with disability in Australia’s current health and economic climate. The findings offer critical insights into three key areas: (1) the urgent need for more robust, targeted support for carers; (2) the importance of longevity planning and respite to ensure continuity of care and reduce significant other burnout; and (3) the pressing need for increased research—particularly co-designed solutions with significant others of people with disability—to address the challenges they experience. The findings also underscore the role that significant others play in sustaining Australia’s care economy. Often operating outside formal employment structures, significant others provided essential supports that filled systemic gaps in disability services; thereby reducing the financial burden on government and healthcare systems. However, the current policy landscape fails to adequately recognise or compensate this labour, which risks reinforcing outdated models of care that overlook the rights and autonomy of both significant others and people with disability. As Australia considers reforms to address care gaps and inequalities, it is imperative to adopt a disability inclusive approach to the care economy—one that values informal caregiving, ensures equitable access to support, and aligns with international human right frameworks. Integrating lived experiences of significant others into policy design will be essential for building holistic and sustainable care systems that benefit all stakeholders.

4.1. The Gendered Nature of Caregiving and Its Implications

A critical lens through which to interpret the results of this study is the profound gender imbalance in the sample with over 90% of participants identifying as women. This is not merely a limitation but a central finding that reflects the deep-rooted feminisation of care in Australia. Social and cultural norms have historically positioned caregiving as a predominantly female role, a reality reflected in national statistics showing women account for seven out of every ten primary carers [26]. The overwhelming challenges described by participants, including navigating fragmented systems, career disruption, and financial strain are therefore not gender-neutral experiences.

These challenges are disproportionately borne by women, shaped by traditional gender roles and systemic inequities that devalue unpaid care work [27]. Many women feel a sense of duty or social expectation to provide care, which can lead to significant personal sacrifices [27]. This is particularly evident in the financial precarity faced by women significant others providing care. Primary carers in Australia lose an average of $567,500 in lifetime earnings and superannuation due to their role, a distinctly gendered outcome of a system reliant on their unpaid labour [4]. Longitudinal studies in Australia also confirm a direct link between the intensity of informal caregiving and increased financial stress, particularly for women [18].

While caregiving can offer positive aspects like personal joy, satisfaction, and a strengthened sense of purpose [11], those benefits are often overshadowed by significant negative impacts when supports and systems are challenging and inadequate [10]. Crucially, the systemic strain described by participants does not diminish the profound joy and meaning they find in their roles; rather, it threatens the sustainability of these positive experiences. Therefore, policy solutions must move beyond generic support and adopt an explicitly intersectional approach. As caregiving is a multifaceted experience involving emotional, physical, and financial dimensions, interventions must be holistic [27]. Strategies like flexible employment opportunities, carer-friendly workplace policies, and financial supports that account for longer-term economic impacts are essential for addressing the structural inequalities that shape the lived experience of women providing informal care.

4.2. The Expanding Significant Other Role, Financial Strain, and Declining Well-Being

The findings of this study highlight a critical and growing challenge faced by significant others. Their caregiving responsibilities are expanding and financial strain is profound. Together, these factors significantly exacerbate stress, burnout, and a decline in overall well-being. Participant reports on financial strain and hardship align with long-standing trends. In 2021, more than half of all carers (52.8%) reported their financial standing as either very poor, poor or just getting along financially [28]. This was significantly higher than the 33.8% reported by non-carers [28]. This ongoing financial strain has only worsened considering the ongoing cost-of-living crisis in Australia and globally. Significant others in this study made substantial personal sacrifices, including forgoing employment, social connections, and financial security [14].

Paradoxically, despite experiencing financial distress and deteriorating health, significant others consistently prioritise the needs of the people with disability they support over their own, increasing their vulnerability and decreasing quality of life. However, formal support structures, such as financial assistance programs, housing options, and access to quality support workers, remain critically insufficient. These gaps in support are particularly pronounced in rural and remote areas, where significant others face long-standing access barriers to essential services [14,17]. This geographic disparity highlights a structural issue: the financialisation of care often fails in thinner marketings, leading to service deserts where informal marginalisation is amplified.

The inadequacy of existing support systems not only places an overwhelming burden on significant others but also exacerbates their financial hardship. Systemic issues, like limited access to affordable housing and accessible community infrastructure, further compound this strain. The significant economic cost of this exclusion ultimately contributes to poorer outcomes for people with disability [29]. When people with disability lack adequate housing, transport, and community access, significant others are often left to absorb the resulting time and material costs [29]. Support payments intended to supplement these costs, for those eligible to receive them, amount to less than 30% of the average weekly earnings of non-carers [4]. These figures emphasise the stark reality that significant others bear the brunt of financial hardship, restricting their ability to achieve economic well-being and long-term financial sustainability for themselves and those they support.

The prolonged financial strain faced by significant others is not merely an economic issue; it is a public health crisis in waiting. Extensive evidence links financial insecurity to poorer physical and mental well-being [30,31]. This highlights a critical intersection: when policy fails to address significant others’ financial stability, it directly contributes to negative health outcomes, placing a greater future burden on the healthcare system. Additional challenges experienced by significant others include social isolation, loneliness and disconnection, with external pressures like natural disasters, also amplifying any existing health concerns [9,32,33,34]. The health and well-being of significant others is therefore not just an individual concern, but a direct indicator of the sustainability of Australia’s entire care system. When significant others’ well-being declines, it signals a systemic failure that directly impacts the stability of Australia’s healthcare and disability support sectors. When significant others experience burnout or are forced to withdraw from their roles due to poor health and well-being, the people with disability they support may become reliant on already under-resourced health and disability services [3,14]. This highlights an urgent need for policy adjustments and solution-oriented interventions that prioritise the well-being of significant others. Such policies are necessary for ensuring the sustainability of the caregiving role and preventing avoidable crises. A more robust and well-structured care system would create a mutually beneficial outcome, ensuring significant others are able to maintain the high-quality care they provide for people with disability, reducing systemic strain, while also ensuring they maintain quality of life for themselves.

4.3. A Call for Improved Respite Support Services

Findings from this study reinforce the critical need for investment in respite services, to alleviate significant other burden, prevent burnout, and improve the sustainability of caregiving. However, this need contrasts with historical data. In 2018, the Survey of Disability, Ageing and Carers found that 86% of carers reported no unmet need for respite care [1]. The discrepancy between past data and our findings suggests a significant, unaddressed shift in the care landscape. We attribute this to two intersecting factors: an increased reliance on informal carers post-COVID-19 and the ongoing cost-of-living crisis. This combination has likely pushed many significant others past a tipping point, intensifying the need for support and revealing gaps in a system that has not kept pace with their reality. As a result, more carers now report experiencing unmet respite needs, highlighting a shift in support requirements that policymakers must address.

Access to respite care is a well-documented protective factor, reducing stress, improving mental health, and enhancing the well-being of significant other carers and care recipients [3,28]. Despite the documented benefits, significant barriers to respite care persist. These challenges are particularly acute in regional, rural and remote areas, where services are scarce and demand often outstrips supply [35,36]. Furthermore, available options frequently fail to meet the unique needs of both significant others and the people they support [35,36]. Additionally, many significant others lack awareness of the respite services available to them, which further impedes access [3,15]. Addressing the barriers to respite requires a multi-faceted approach, including expanding the availability and flexibility of respite services to meet the diverse needs of significant others and people with disability, improving awareness campaigns and outreach efforts to ensure significant others understand their entitlements, and implementing equitable service distribution across regions.

The National Carer Strategy 2023–2024 [3] underscores the importance of respite as a key support mechanism, recognising that effective respite extends beyond short-term alternative care and should also include practical assistance with daily living tasks and occupations. Moving forward, co-designing respite services and solutions with significant others of people with disability is critical to ensuring that service delivery models are fit-for-purpose, accessible, and responsive to real-world caregiving challenges, needs and preferences.

4.4. Building a Sustainable Care System: The Case for Longevity Planning

Significant others in this study expressed significant concern about the sustainability of their caregiving roles, with many fearing both the long-term consequences of their declining health and the lack of quality services to support continuity of care for the person with a disability that they support. These concerns are justified, as Australia’s ageing population and increasing life expectancy will likely extend caregiving responsibilities over longer periods [3]. Without adequate formal supports, more significant others may struggle to sustain their roles long-term. This creates a significant risk, leaving people with disability bereft of continuity of support [3,17]. Without structured longevity planning, abrupt care transitions into institutional care may occur—placing people with disability at risk, particularly for those with complex disability who require gradual, specialised transitions [3,37,38]. As such, longevity planning is essential to establishing robust support systems that safeguard both significant others, their caregiving role and the people they care for.

The question remains: What should long-term longevity planning focus on? The recently published National Carers Strategy 2023–2024 [3] aims to guide policy and programme development in Australia to better support carers, including significant others of people with disability. This study’s findings similarly align with this strategy’s priorities, underscoring the need for stronger support systems that enable significant others to sustain their roles without compromising their well-being. Several key measures are required to achieve this. First, access to fit-for-purpose respite services must be expanded. Second, equitable access to essential services must be guaranteed for both people with disability and significant others. Finally, financial assistance must be strengthened to reflect rising living costs, and formal support structures must become more responsive to the increasing demands placed on significant others [3,39].

Financial insecurity remains a significant barrier to carer sustainability [4]. Enhancing financial support through increased Carer Payment rates, targeted subsidies for essential expenses, and the implementation of workforce participation programmes can help mitigate long-term financial hardship [39]. Participants in this study specifically called for access to flexible employment opportunities. These include options like remote work, carer-friendly workplace policies and re-entry programmes. Research shows these measures improve economic security and well-being by helping significant others balance their responsibilities [3,17]. Without addressing financial insecurity, many significant others will continue to experience financial strain, further jeopardising their ability to sustain their caregiving roles long-term.

Furthermore, the results of this study highlight that, beyond financial strain, additional measures are necessary to address the health and well-being of significant others of people with disability. This aligns with the third priority area of the National Carer Strategy 2023–2024 [3]. Greater investment is needed in programmes like Carer Gateway [40], which supports significant others through information, resources, and services. However, more must be done to ensure all carers receive adequate and sustainable support. Expanding peer support programmes can help foster community connections and reduce emotional distress. These programmes also provide significant others with a broader network to draw from when they need assistance or respite for their own health needs [3,41,42]. Equitable access to mental health services for significant others is also important, ensuring access to psychological support that addresses the complexities of their role [3]. However, for these measures to be effective, increased funding is necessary to enhance both the availability and affordability of services.

Lastly, expanding the research evidence base is essential to longevity planning. While the significant social and economic contributions of significant others in Australia are formally acknowledged [4], their rights and needs remain insufficiently recognised and embedded within policy reforms [3,39]. Aligning with the National Carer Strategy 2023–2024 [3], there is a pressing need to strengthen research on the lived experiences of significant others supporting people with disability. Doing so will ensure their caregiving role is properly acknowledged, respected, and valued. In turn, this will inform actionable reforms that directly address their real-world needs and preferences. Additionally, the prevailing narrative that caregiving is inherently burdensome must be reframed. This study indicates that it is not the role itself but the lack of adequate formal support systems that create undue strain. These burdens can and should be alleviated through targeted policy and systemic improvements. Moving towards a strengths-based approach that recognises the resilience, adaptability, problem-solving skills, and deep commitment demonstrated by carers can help shift the focus from burden to the strengths they bring to the caregiving role [33].

4.5. Inclusive Research and Co-Design Solutions: The Only Way Forward

Despite their essential role, research focused on the lived experiences of significant others remains scarce. This is not just an academic issue, but a critical policy issue that creates a persistent knowledge gap. This lack of data hinders the development of effective, evidence-based solutions and results in policies or interventions that often fail to reflect the realities of significant other caregiving. Meaningful inclusion in research is essential to ensuring solutions are informed by significant others’ real-world challenges, avoiding exclusionary or tokenistic approaches [20,21,43]. This also means recognising and valuing the positive aspects of their role, such as the profound joy and purpose participants described. By prioritising inclusivity, qualitative methods can produce high-quality evidence and meaningful solutions that reflect the complex challenges and priorities of significant others and support hard data [20,21]. A comprehensive understanding of the caregiving role and the supports required is vital to ensuring carers receive the recognition, resources, and assistance necessary to sustain their contributions.

The results of this study highlight the necessity of inclusive, co-designed research to ensure that policies and interventions are shaped by the voices of significant others rather than assumptions made by policymakers or service providers [20]. Co-design offers a critical pathway to improving service provision, as it dismantles hierarchical barriers and leverages lived experiences to develop practical and meaningful solutions. First, research initiatives must account for the diverse needs of significant others of people with disability across rural, remote, and urban areas, as our findings indicate that geographic disparities significantly impact access to support and services. Second, given the substantial caregiving responsibilities and increased administrative load expressed by participants, participation timeframes should be carefully structured to accommodate significant other time constraints (e.g., offering shorter, more flexible engagement opportunities). Finally, as many carers experience significant financial strain, fair compensation for their time is not only a practical necessity but also an ethical and moral imperative.

4.6. Reflexivity and Interpretive Considerations

As with all qualitative and participatory types of research, the interpretation of findings in this study was shaped not only by participant contributions, but also by the methodological boundaries of the research process. The themes presented in this study were developed through a participatory and inclusive analytic process. However, it is important to acknowledge how methodological constraints may have shaped the development of the findings. The optional nature of open-ended responses meant that participants could choose which aspects of their experiences to share, potentially privileging more salient or urgent narratives, while leaving other dimensions underexplored. Self-selection in recruitment and open-ended response sharing may have contributed to the prominence of certain themes while other experiences may have been less visible. Additionally, while coding was collaboratively conducted and reviewed, the absence of formal inter-coder reliability testing means that thematic boundaries were shaped through consensus rather than statistical calibration. This interpretive process, grounded in lived experience and participatory values, is usual in qualitative research, but may have amplified themes that resonated with the researcher’s own positionalities, particularly around advocacy and systemic reform. Rather than viewing these dynamics as limitations, we recognise them as inherent to inclusive qualitative inquiry. Acknowledging the boundaries of the analysis strengths the credibility of the findings and invites ongoing dialogue about how participatory research can balance authenticity with methodological rigour.

5. Limitations

While this study provides valuable insights, several limitations should be considered when interpreting the findings.

The study employed a non-probably convenience sample, which, while capturing a broad range of experiences, is not statistically representative of all significant others in Queensland. The sample was predominantly women. This gender skew likely reflects a combination of social reality and sampling bias, as discussed in the methods. Informal care in Australia is a highly feminised role, as such, a sample drawn from this population is expected to be majority female. However, a self-selection bias, where women may be more likely to participate in health and social research, likely amplified this effect. The primary implication of this could skew transferability of the findings. The experiences detailed in this report are powerful and valid, but cannot be generalised to the experiences of carers who are men, whose perspectives are largely absent. Future research should implement targeted recruitment strategies to specifically capture men in caregiving roles to provide a more comprehensive understanding.

While the survey instrument was extensively co-designed, grounded in a policy framework, and user-tested for accessibility, acceptability, and feasibility, formal scientific validation including psychometric testing was not undertaken. Iteration between the 2023 version of the surveys and the 2024 version did occur following some validation work. Data were also collected at a single time point, which likely limited the depth of the results and made them primarily reflective of the respondents’ circumstances at that specific moment. Prospective data collection over time would address this limitation, as annual follow-up surveys or interviews will help maintain the findings’ relevance and identify patterns over time which are already planned and ongoing. Additionally, most participants were urban dwellers, with limited input from those in remote or rural areas, as well as from First Australians. Increasing participation from these groups would provide a more comprehensive understanding of the varied experiences, perspectives, and needs of significant others across Australia. Some targeted recruitment was in place for more diverse and intersectional participants; however, these strategies primarily targeted people with disability rather than significant others. The reliance on electronic data collection (i.e., online surveys) may have contributed to a ‘digital divide’, potentially excluding individuals who lack access to the necessary infrastructure or digital literacy. While participants were offered multiple modes of participation, including telephone, paper copies, and face-to-face supported completion, less than 10% of participants utilised these alternative pathways. As a result, the findings may be more representative of participants who are more technologically proficient. Despite these limitations, the results offer a valuable baseline for understanding significant others’ perspectives.

6. Conclusions

As demonstrated in this study, significant others provide a significant contribution to the health and well-being of people with disability. While their role brings immense joy and purpose, they undertake it within fragmented systems that compromise their own health and long-term capacity to provide care. This underscores the urgent need for policy reform to better support significant others in caring roles. Without systemic improvements, significant others of people with disability will continue to experience undue strain, jeopardising both their well-being and the stability of Australia’s care economy. To that end, this research points to several recommendations:

• Develop and fund flexible, fit-for-purpose respite services, particularly in regional and remote areas, to prevent carer burnout.
• Implement carer-friendly workplace policies, including flexible work arrangements and re-entry programmes to improve economic security.
• Strengthen financial supports to better reflect the true cost of living and the economic impact of caregiving, mitigating long-term financial hardship.

Targeted solutions, with sustained investment, oversight, and accountability, can promote equitable outcomes and establish structural safeguards to prevent the ongoing challenges faced by significant others of people with disability. Without systemic improvements, significant others will continue to experience strain, ultimately jeopardising both their ability to provide care and the broader stability of Australia’s care economy. By acknowledging, raising awareness, and recognising the contribution of significant others caring for people with disability, Australia invests not only in individuals but also in the resilience and sustainability of the entire healthcare system.

Crucially, the insights presented in this paper were made possible through the study’s participatory and citizen science methodology. By centering the lived expertise of people with disability and their significant others, this approach ensures that the findings are authentically grounded in real-world experience, leading to more relevant and impactful policy recommendations. Reaffirming the value of co-produced research is essential; its potential to reshape both scientific and policy practices offers a powerful pathway toward a more equitable and sustainable care system. Future research should build on the foundations established in this study to longitudinally track how significant others’ needs and experiences evolve over time, including targeted investigations of men, First Australians, and carers in rural and remote settings. Additional cross-state comparisons and national longitudinal tracking would be relevant and welcome.