Navigating multiple and complex systems of care and support with ageing family carers from multicultural backgrounds in Australia

Abstract

Ageing family caregivers of family members with disability must navigate complex social care systems within a single household for long-term and end-of-life transitions. This is particularly challenging for migrants from culturally and racially marginalised (CaRM) backgrounds, given their historical exclusion from developing disability and aged care support systems. Limited research exists on the lived experiences of new and second-generation CaRM communities providing informal care to family members with disabilities, globally and in Australia. This paper highlights the challenges faced by CaRM families navigating racial, ethnic, and immigration politics while seeking access to appropriate disability and ageing social care supports. The findings reveal that Many CaRM families face isolation and difficulty accessing needed support due to misconceptions about their strong local networks. Moreover, the significance of place, especially in low-resource urban areas, poses challenges for ageing family primary caregivers managing a dual long-term care arrangement, leading to uncertainties about their future.

Points of interest

• Families in culturally and racially marginalised (CaRM) communities experience significant difficulties in seeking help for disability care changes (or transitions) when primary caregivers are ageing;

• Disability and ageing support systems in Australia often wrongly assume that CaRM families have strong support networks that help to access formal care and support;

• Parents need long term support for their adult child with a disability, but want to avoid giving their other adult children without disability care responsibilities after their own death;

• Many families feel isolated and alone because of language barriers, and cultural exclusion. This makes it very difficult to seek the right care and support for both the ageing carers and family members with disability;

• Many factors affect immigrant ageing family caregivers in seeking suitable care transition options for family members with disability. These include property ownership, caregiver age, personal health, partner support, and other adult children in the family;

• Therefore, families need different social care systems to plan support changes (a) short term for the ageing family caregiver, and (b) long-term for the family member with disability, into end-of-life stages.

Keywords:

• Ageing
• caregivers
• disability
• care transition
• culturally and linguistically marginalised communities
• Western Sydney

1. Introduction

Disabled people are ageing and living longer due to broad structural changes that have promoted their rights, advances in medicine, and support for improvements to health and socio-emotional wellbeing (Tse, Kwan, and Lau 2018; Walker et al. 2020). A small but growing body of research have suggested that there is also a significant portion of the disability community facing a crisis in their longstanding care arrangements within their family homes, as their primary support and care networks, are also ageing (Forrester-Jones 2019; Petriwskyj, Adkins, and Franz 2017). For many of these families, searching for long-term formal care and support services, particularly outside of the home, is a new phenomenon. A common trend that appears to be emerging across settler-colonial countries, such as Australia and Canada, is that culturally and racially marginalised (CaRM) families have had little access to local formalised care systems (see Khanlou et al. 2017; Soldatic et al. 2024). Disability and Aged care and support systems have been developed with the explicit exclusion of disabled people and their families from CaRM backgrounds due to the history of migration in relation to disability (see Soldatic et al. 2020). When they have been somewhat included, these sectors have operated on racial and ethnic biases that assume that CaRM families want to be the primary providers of support and care (see Soldatic et al. 2020). As our research suggests outlined below, these are ethno-racial myths that particularly disadvantage women migrant carers from CaRM communities.

There is thus a group of ageing family caregivers who have little direct experience in navigating highly complex formalised care systems for disability supports, and now at this new transition point, aged care. Many of these families are at a crisis point because as ageing caregivers, they themselves now require care. Planning and allocating family resources for an optimal transition to two distinct care arrangements may include evaluating high quality assistance and care for their ageing needs in one social care market while simultaneously, planning and resourcing the transition to disability social care markets for disabled family members.

International literature already clearly suggests that for many disabled people and their families’ key life transitions are complex and difficult and that critical transitions are further compounded by concerns around migration, cultural and racial diversity, socio-economic status and so forth (Petriwskyj, Adkins, and Franz 2017; Schepens, Van Puyenbroeck, and Maes 2019; Walker and Hutchinson 2018). For new migrant and second-generation migrant households and families with members with disability in Australia, the process is even more difficult as historically, their access to disability support and care systems have been restricted due to long standing exclusionary policies on disability immigration. As a result, multicultural families, particularly those from low socio-economic locations, have not had access to disability services and supports, and when such services and supports are available, they are often culturally inappropriate or non-responsive (see Soldatic et al. 2020).

Despite significant global mobility since WWII, there is a dearth of research within Australian and internationally on the lived experiences of new and second-generation migrants from culturally and racially marginalised (CaRM) backgrounds that examine the nexus of disability and aged care service provision. Moreover, there have been even fewer studies that explicitly focus on understanding the necessary support for CaRM families as they transition to social care at this nexus. The little that is known clearly outlines the propensity of migrant families to continue to care for their disabled family member for as long as possible and at times, impacting upon their own quality of life in these final years. This little known fact however suggests that migrant families with longer periods of settlement, both first and second generation, are making normative shifts in their understandings of caring for other family members. For example, Walker et al. (2020) contend that immigrant families are shifting to more ‘Anglo’ values, increasingly wanting to access supported independent living (SIL) options for their family members with intellectual disabilities.

This article seeks to contribute to addressing this significant knowledge gap by drawing upon indepth interviews and follow up workshops with CaRM families who remain the primary carer and/or support of their adult children as they move to significant old age (58–70 plus). Working in partnership with a multicultural disability advocacy organisation in Greater Western Sydney (GWS), the study’s participants were drawn from some of the most diverse and low-income neighbourhoods in Australia (Hasman and Křížková 2023; Soldatic et al. 2020). The findings suggest that first and second-generation migrant families are significantly under-serviced by both the disability service system and the aged care system, creating significant hardship at a core transitional period for the entire household. These intersections make visible the different (and sometimes similar) lived experiences of the participants and help illuminate the complex discourse of ageing family caregivers from CaRM background, and their plans for future transitions for themselves and their family member/s with disability.

2. Methodological design – qualitative research and data triangulation

Qualitative methods are useful for comprehending the human experience in particular contexts and from the perspectives of local minority voices (Balram, 2022; Rahman 2016; Renz, Carrington, and Badger 2018). Moreover, qualitative data collection methods are used to integrate the multiple realities of diverse participants, eliciting deeper insights and nuance across divergent participant groups (Balram, 2022 and Berg 2012). Given the intersectional foci of the research area of concern, in this paper, we adopted qualitative methodologies to enable distilling the diverse experiences of families which sit in tandem with the ongoing prejudices they face living at the complex cross-roads of race, class, ethnic and migration politics and disability (Hill Collins and Bilge 2016).

2.1. Participant recruitment

The pilot project had three aims: (1) to understand the care transition experiences of ageing immigrant family caregivers and their ageing family members with disability from low socio-economic areas of greater Western Sydney; (2) to explore formal arrangements that enable supportive care transitions for these two participant cohorts; and (3) to employ the findings from the study to inform the development of a care transition tool kit for ageing immigrant family caregivers and their family members with disability. In this paper, we specifically report on the first aim of the project.

The project aims required the development of a partnership with a support and advocacy organisation for disabled people from CaRM backgrounds. Following ethics clearance from Western Sydney University (Ethics Number H15101) the research team approached the Multicultural Disability Advocacy Association (MDAA) of NSW with project plans and aims; following its agreement to participate, MDAA permitted and enabled access to its clients. During one of its regular meetings MDAA allowed the research team to present and explain the project to its clients, and an MDAA employee assisted the research team by gathering names of potential participants. Research team members then followed up by telephone to confirm potential participant availability and interest in the pilot study. In this way, the participants only consented to participate if/when they were available, if they felt a connection to the project, and if they wanted their voices and experiences heard.

For participants keen to participate in the pilot study, time and venue for potential interviews were negotiated over the phone. Verbal explanations of the project components and the participation requirements of the participants were explained before asking for written consent. Consent forms were sought before the commencement of any interviews, and participants were informed when audio-recording of interviews commenced. Even if participants had provided written consent prior to the start of an interview, they were asked again to give verbal consent to the audio recording. Participants were informed that they could decline any question that made them uncomfortable, and that they could terminate the interview at any time (Heath et al. 2007; Woodgate, Zurba, and Tennent 2017), and that doing so would not affect their care and relationship with MDAA.

2.2. Data collection

Data was collected via three means: semi-structured individual interviews; a participant workshop involving both caregivers and the family member with a disability; and researcher observations/reflection notes. For interviews, research team members travelled to the venue requested by each of the participants. Given their age, care responsibilities and at times, limited capacity to travel themselves, all locations for individual interviews were convenient to the interviewee. They were conducted in either private settings (such as the family home), or in public settings such as a local shopping mall/coffee shop convenient to them. There was a prepared schedule for the interview, which had topics/questions that we wanted to explore in the conversation. Questions enabled us to explore several directions with participants that were not predictable when the interview schedule was being created (Brown and Danaher 2019).

All the interviewed participants were invited to the participant workshop, which at least 70% of the caregivers and 50% of the family member with disability attended. Participants who travelled to the workshop were compensated for their time and travel costs. In this workshop, the research team shared the findings from individual and family interviews. Over a three-hour period, these were discussed collectively with participants exploring similarities, differences, and shared understandings, of socio-cultural practices in relation to seeking, and being informed of, social care systems for family carers and/or people with disability receiving family support. Collective discussion of the findings led to discussion of other experiences, and new concerns emerged across the group, such as complexity in terms of planning care transitions for both the ageing family carer and the adult family member with disability, which results in severe stress and anxiety for both. This workshop platform allowed rich and thick data to be collected and provided participants the opportunity to review, refine and/or correct the findings and establish a broader set of generalisable concerns (Reilly 2013). Individual and family interviews, group workshop, and observations/reflections were then analysed enabling triangulation and validation across these qualitative data sets (Renz, Carrington, and Badger 2018 and (Wilson, 2014).

2.2.1. The coding process of the triangulated data

All Participant interview transcripts, transcribed recordings from the workshop and also all researcher notes and observations were de-identified across all participants (ageing family caregivers and disabled family members). Each research team member was allocated two transcripts for first round thematic coding. Researchers then undertook a data analysis workshop, where each research team member provided an overview of their thematic analysis. When ambiguity arose, these transcripts were shared with the team, reviewed with an in depth reading across the developing coding framework. The transcripts were read thoroughly, line by line, with a focus on axial rather than open coding (Strauss and Corbin 1990). Here, for each distinctive emerging theme a particular colour was used to highlight the portion of associated data. The next stage then identified themes/subjects of interest, which were carefully re-read. Once all the transcripts were colour coded thematically, themes and sub-themes were re-read to ensure they were coded as precisely as possible and, re-coded to merge and/or remove codes where it was necessary (Balram, 2022).

3. Findings: family experiences and navigations

There is a dearth of research on the lived experiences of first and second-generation immigrant communities from minority backgrounds in the provision of disability and aged care services, particularly those that focus on understanding how best to support such families during social care transition processes. In this section, we illuminate the emerging themes and sub-themes: ‘displacement’, ‘family and community support’, ‘barriers to accessibility’ and ‘care transitions’, that surfaced in the coding of interviews.

3.1. Displacement: the role of place and space

The intersectional lens adopted reveals that immigrant ageing family caregivers in Western Sydney have different levels of adaptability and flexibility towards the diverse care transition pathways available to them. Property ownership intersected with the age of the family caregiver, their own health, whether they had a partner, and if there were other (non-disabled) children, to influence their attitudes to care transitions. Those who owned property had to navigate an added layer of complexity, such as having a deep connection with the place that they owned, and also worrying about how inheriting property would aid their family members with disability and in some circumstances, potentially make them vulnerable to care and support arrangements that were not optimal for disabled family members, as described in the following quotes:

‘Having a property complicates a lot of things you know!’ (Anita –research participant) and the next quotation is a direct response to Anita’s comment by another participant, Roshni ….

Of course it does, I get so anxious thinking about it and some of that anxiety also rubs off on to Sen. We are thinking of converting the front part of the house into an accommodation for him and I’m going to live in the back of the house as long as I’m there. After that, it will be a group home and other people, who’ll be his friends, they will live there. He’ll be renting it to them, (Roshni – research participant).

The above is an excerpt taken from interviews with two South Asian women who migrated to Australia prior to the birth of their children, Anita (78 years old) and Roshni (73 years old). They are sharing their feelings about property inheritance and support system management after their death and all of the conundrums that emerge. Roshni who owns a property reveals that she faces uncertainties in terms of planning care transitions for both herself and her son (Sen), which results in severe stress and anxiety for both of them. In Roshni’s case there are other layers of complexity – she is a single mother with no other children, her son is on the higher end of the autism spectrum and requires a lot of support, and she is considering how to alter his accommodation so that he is not vulnerable during the final years of her life and post-death where he will not have an external family member to offer general oversight to his living situation.

My son, VJ has Asperger’s and in 2015 I started transitioning him to his own housing, and now he is stuck in public housing, which is absolutely substandard…Sometimes even the support worker who is meant to come twice a week doesn’t turn up - last minute I have to take VJ to do his shopping. (Anita – research participant).

Anita’s son VJ has already transitioned into living in allocated public housing, but still requires his mother’s help, so she needs to travel and do things for her son whilst dealing with her own health issues and age care transition plans. Anita’s other two married children live further away, and while they could presumably help, she and VJ do not get family support. Anita complained that one of her son’s works long hours and if she lived closer she could help with her grandson who also has developmental delay. Hien (61 year old Southeast Asian woman) and Farida (64 year old Arab woman) both have adult non-disabled children who do not actively assist with their caregiving duties for their disabled siblings. Hien’s husband had aged and developed numerous health issues which intersected with home ownership, and having all their adult children living with them due to high rents in Sydney, impacting their future transition care plan for their son, Leon who is described as non-verbal in his communication style. These findings confirm previous studies that immigrant families favour maintaining long-term care within the family (Walker et al. 2020), while also challenging this assumption among second generation migrants. In contrast, an older study carried out by Stevens (2010) in Australia reported that while migrant parents exhibited a more pessimistic outlook on their children’s future, they assessed their own levels of happiness and social connectedness as equivalent to those of non-migrant parents.

Participants who did not own property were more open to the place and space they would/could occupy in the future. Here the intersection of religion and faith in matters of their care was especially prominent.

I am getting old too. I’m 64 and not sure about my future, I always pray to God that he look after me; I pray five times a day and fast. I’m a very good Muslim… If I have to go to aged care, I’m ready to adapt to things ‘cause I am living in this country. Any aged care in Australia, either Catholic, Christian or by the Muslim community - they must provide culturally appropriate services. They must have language interpreters, appropriate food, and for people who don’t understand English, the services and facilities, they should translate in different languages. (Farida – research participant).

As seen in the excerpt above, Farida considers herself a good Muslim and would accept whatever the future held as long as it was culturally appropriate services. This finding aligns with research conducted in the United States by Kim and Dababnah (2022), examining the perspectives of Korean immigrant parents on their children’s (who have intellectual and developmental disabilities) transition to adulthood. The study emphasises the importance of maintaining connectedness post-transition, advocating for sustained ­family support, and expressing a preference for culturally acceptable group homes.

3.2. Family and community support: the societal myths of family care

In the study all the ageing family caregivers mentioned a lack of family support and supportive social networks. This impacted the planning of care transition for both ageing family caregivers and their family member with disability. For example, since Farida cannot rely on her extended family for support, she encourages Ishan (her adult son with disability) to apply for housing and independent living. Farida’s attempt at bringing her young brother to Australia to assist with Ishan did not work out.

The experiences of participants such as Hien, Farida, Anita and Roshni argue against the previous belief that migrant families have family and support networks in their community. Roshni’s story specifically aligns with findings from a Finnish study (Heino and Lillrank 2022) where in both cases delayed or inappropriate health and social services significantly impact parents’ daily lives, resulting in lasting stress and hindering their integration into the new country.

Moreover, our findings confirm those of Walker et al. (2020) who noted subtle shifts in immigrant families towards what could be seen as more ‘Anglo’ values, with families increasingly wanting to access out-of-home accommodation for their family members with intellectual disabilities. The results also align with a U.S. study, reinforcing that diverse identities (race, gender, country of origin, social class, disability, and family structure) present challenges for culturally diverse families with disabled children in accessing and using supportive services (Pang, Dinora, and Yarbrough 2020). Our findings also brings to the forefront the intersectional play of culture, age, health issues (of ageing family caregiver), religion and gender in terms of the care support that these communities need; as a migrant ageing Muslim woman Farida required a male caregiver to help out with her son’s needs.

I can’t rely on family; I called my younger brother as a caregiver from overseas, long before. I paid money, fees and everything. He only helped about a month, and then he was sleeping and I was taking Ishan in the wheelchair to the bathroom under the shower. I asked my brother to help Ishan in the shower because I’m a woman. (Farida – research participant).

The excerpt indicates that Farida found it culturally and religiously inappropriate to provide certain aspects of care, such as showering her adult son, and she sought the help of her brother at her expense, which did not work out as well. In Anita’s case, lack of family support resulted in her limited social life.

I get very lonely. I live alone and get zero support… VJ’s two younger brothers, who are 42 and 46, are married, got kids and are so busy with life - they need help themselves. I don’t get to see them and I have to send a text message to ask how they are going, then I might get a response, but nobody asks me how things are going for me.

The above excerpt reveals the imbalance between social life and caregiving responsibilities can affect the wellbeing of the immigrant ageing family caregivers. The data further discloses that ageing intersecting with being a single-family caregiver has higher risks of informal caregiver burnouts. For example, Anita would like to have an outing, but nobody takes her out. Roshni reveals similar sentiments of not getting enough help from family:

It does help; Sen’s father passed away two years ago. Prior to that Sen had reasonable contact with him - once a week, we would visit him for four to five hours. Sometimes, in an emergency, his father would step in, but never for overnight care. (Roshni).

In the above excerpt, Roshni reveals that when her late husband (whom she was separated from) was alive he sometimes helped out with their son, but never overnight. She now cares for Sen full time. Even though Roshni and Sen’s father were separated her ex-husband was still involved in his son’s life and provided some care and assistance.

Moreover, analysing the narrative through an intersectional lens illuminates that Anita who is 78 years old and has two other older sons, continues to shoulder disproportionate caregiver responsibilities in the case of her son, VJ. Therefore, gender dynamics continue to influence informal caregiving experiences. Historically, caregiving roles have been seen as being mostly performed by women and with women being primary caregivers in families (Rodrigues and Ilinca 2021). Rodrigues and Ilinca (2021) further point out that changes in societal dynamics and gender norms have altered the informal caregiving landscape, with men’s engagement having significantly increased over the past few years. However, research carried out in New Zealand (Stace 2013), India (Mathias et al. 2019), and South Africa (McKenzie and McConkey 2016), reveal that women still make the bulk of caregivers both in the formal and informal sectors. This is also typical in our study in Western Sydney, where eight out of the nine family caregivers, were women (Doh et al. 2023). Moreover, the special rapporteur on extreme poverty and human rights, focussing on unpaid care work and women’s human rights, contends that onerous and uneven care obligations constitute a significant barrier to gender equality and women’s equal enjoyment of human rights and, in many situations, consign women to poverty (Sepulveda, 2013). Furthermore, Rodrigues and Ilinca (2021) note that the expectation that women should naturally excel in nurturing roles can put additional pressure and strain on caregivers who are female. This is evident in Anita’s case, where she struggles to strike a balance between her caregiving responsibilities and other aspects of her life.

3.3. Care transitions – future plans

The families in this cohort revealed that they were at different stages of care transition plans. Hien’s family had just begun to think about it for Leon, while Anita was 78 and was thinking about her own age care needs, as well as her son VJ’s transition into living alone. Although Farida was much younger than Anita and only 64, she too was thinking about her care transition and encouraged her son Ishan to enter department housing and to live independently like his father- whom she was separated from. Roshni owns a property but finds it rather difficult to navigate this extra layer of associated complexity, and wanted to set up a group home for her son Sen with other people. She hoped Sen would rent space to the other residents, and that they would also be his friends, indicating a concern for his long-term companionship. Farida is keen for Ishan to pursue a Ukranian woman he met online (and to whom he was sending money). If that happened, Farida could move out, as she was clearly burnt out.

The data indicates that within any single household, families are navigating a multitude of social care systems to plan out supportive transitions to both immediate (ageing family caregiver) and long-term (family member with disability) end-of-life transitions. Families may have other non-disabled children, but the parents do not want to burden them. At the same time, they hope that some support will be provided to their adult child with disability when they die.

For immigrant families navigating the care transition, the processes are doubly challenging due to the complexities associated with property and guardianships laws, which are in English. This was challenging even for the well-educated Roshni with her PhD and for Anita who was a high school teacher. Immigrant families have had historically restricted access to disability support and care systems (Australian Government Productivity Commision, 2020). This finding aligns with a study in Finland, which reported that migrant parents fare service-related issues primarily due to language barriers and unfamiliarity with the service system (Heino and Lillrank 2022). Therefore, some consideration needs to be put towards cultural brokering - as Pang, Dinora, and Yarbrough (2020) in their US study highlight this as a promising approach to address challenges and cater to the diverse needs of migrant families with disabled children. This study clearly shows that policy makers and service providers should not assume the family will support ageing disabled children, so they must take into account different family structures when considering requirements for care transition. Such considerations are timely for the planning and development of specific services in the disability and age care sectors to assist this cohort of new migrant and second generation migrant communities in Australia (Doh et al. 2023).

4. Concluding discussion

This study is based on a pilot conducted in the Australian context, involving ageing family caregivers and their family members with disabilities. The participants are drawn from both first and second-generation immigrant populations residing in low socio-economic areas of Greater Western Sydney, Australia. This original study has resulted in various outputs for different audiences, for example a report for policy makers and partnering advocacy organisation and journal articles for researchers, scholars and policy makers.

By illuminating narratives of ageing family caregivers and their family members with disability this paper has highlighted this cohort’s unique voice, shedding light on their experiences of living with and navigating care transitions, experiences otherwise ignored, as this cohort is usually not captured. This paper employs an intersectional lens to explore the diverse factors influencing adaptability among immigrant ageing family caregivers in Western Sydney during various care transitions. It argues that ageing families in culturally and racially marginalised communities encounter challenges when navigating these transitions, especially as primary family carers age. Disability and ageing support systems in Australia often assume strong support networks for CaRM families, which may not be the case when there’s a family member with disability in the household. Families within these households navigate different social care systems for both immediate (ageing family caregiver) and long-term (family member with a disability) end-of-life stages. They aim to avoid burdening non-disabled children while seeking support for their adult child with a disability. Additionally, language barriers, cultural exclusion, and assumptions have left many CaRM families isolated, making it challenging to negotiate appropriate care and support for both ageing family caregivers and the family member with a lifelong disability.

Disclosure statement

No potential conflict of interest was reported by the author(s).