Abstract
Despite the reported positive impact of informal personal care on the cared for, carers themselves experience a range of adverse health outcomes. In addition, Australian care policies primarily target the cared for, while the needs of carers tend to be disregarded. This article draws on data collected from 36 interviews with carers who were offered an opportunity to engage in a pilot training programme focused on enhancing opportunities. Viewed through the lens of self-determination theory, the training served as a stimulus in supporting carers’ psychological needs, demonstrating that more targeted, nuanced and meaningful supports are required to maintain carers’ motivation and well-being.
Introduction
Informal primary carers (hereafter, carers) provide full-time care to an individual (often in their own family or immediate community) in need of support due to disability, a medical condition, mental illness or frailty (Department of Social Services, no date). They experience high emotional and relational demands, and separating the ‘self’ from the care they provide is often a complex and challenging undertaking (see, for example, O’Shaughnessy et al, 2010). Many carers do not ‘opt in’ to providing personal care; rather, they fall into it, both through subtle and explicit expectations, and through deep feelings of obligation (Kietzman et al, 2013). As such, they are generally a heterogeneous group providing care for individuals with a wide range of health issues and/or disabilities (Onwumere et al, 2021). Due to a lack of other accessible support services, carers tend to provide care full-time, often 24/7, exacerbating demands and risking such outcomes as exhaustion, depression and anxiety (Jones et al, 2016). While earlier work has emphasised the importance of meeting the relational needs of the cared for (Meltzer and Davy, 2019), less is known about the experiences and need fulfilment of those providing the care, including their own relational well-being. This study explores the narratives of carers through the lens of self-determination theory (SDT), which explains the process by which motivation is developed and its influence on human behaviour and well-being (Deci and Ryan, 1985). According to Deci and Ryan (1985), high-quality motivation and optimal human functioning is reliant on the fulfilment of three fundamental needs: autonomy, competence and relatedness. Drawing on these three SDT tenets, this article highlights the challenges carers face, their perspectives of themselves and their futures, and how the opportunity to engage in self-driven training supports their need for autonomy, competence and relatedness.
Carers often leave paid work, or put their careers on hold, to care for a family member or friend requiring full-time care (Kamerling and Smith, 2009). Often confined to providing care within the home, carers may lack experiences that help to build social connections in their communities and sustain their motivation and well-being. Consequently, carers may lack the means and opportunities to work towards their own aspirations, meet challenging goals that foster personal growth or build strong personal and professional social ties with others outside of their family unit. Furthermore, they are providing care within a national policy framework that has become increasingly person centred (Malbon et al, 2018). In Australia, the National Disability Insurance Scheme (NDIS) Act was passed in 2013 when the Council of Australian Governments agreed that disability services needed reforming. The NDIS provides funding to eligible individuals with a disability to gain greater independence, spend more time with family and friends, and obtain an improved quality of life (NDIS, 2022). However, the individualisation of NDIS processes, which aim to empower those who are cared for (Fisher et al, 2019), can disempower carers and, in turn, the support they need to provide quality care.
Carers’ contributions appear not to be clearly or consistently recognised by the government and society. While the NDIS explicitly recognises the critical role carers play in the well-being of persons cared for, its guidelines state that providing funding for carers may be detrimental to family relationships (Meltzer and Davy, 2019). In reality, many carers provide care around the clock, engaging in labour that far exceeds the demands of a full-time job. This labour entails a sacrifice of carers’ personal needs and goals, for which they are compensated at a level that is only just over half of Australia’s minimum wage (Fair Work Ombudsman, 2022; Services Australia, 2021). Carers may experience financial hardship due to lost income and benefits, as well as care-related out-of-pocket expenditures (Duncan et al, 2020). Many struggle to meet living expenses and, often due to interrupted workforce participation, are subsequently insufficiently prepared for retirement (Hughes, 2007). The stress associated with this situation can be further exacerbated by other financial pressures (for example, high medical costs for the cared for), likely adding to the strain on family relationships and individual well-being. In an Australian survey, 52.8 per cent of carers reported their household financial well-being as ‘very poor’, ‘poor’ or that they were ‘just getting along financially’ (Carers Australia, 2022).
Some governments have investigated ways in which carers can be better supported so that they, in turn, can sustain quality care; in some cases, these have been implemented. The New Zealand Government (2020), for instance, now pays some family carers supporting people with high care needs at above the minimum wage. Australian government organisations have also sought to better assist carers in their caring role through intervention supports and services (Department of Social Services, n.d.). Bursary programmes are available for a capped number (1,000 bursaries of AUS$3,000 per annum) of carers aged 25 years and under, as well as courses for carers to assist in the learning of new skills important in their caring role and opportunities to interact with social workers or other carers. Other than the bursary programme, these offerings continue to link carers with their caring identity, rather than offering them an opportunity to learn skills or obtain knowledge they are personally motivated to acquire.
Little is known about the impact of carer-focused initiatives extending beyond the provision of support or training related to the care work itself, particularly from the perspectives of carers themselves. Utilising the tenets of self-determination theory (SDT), this paper has three main aims. First, our study aims to contribute to research on the experiences and needs of carers who, despite formalised support structures over the past 50 years, continue to lack effective support while looking after vulnerable members of society. Second, the perceived impact of a specific, bespoke, pilot training programme for carers (referred to hereafter as the ‘Opportunity’) is investigated in an effort to identify ways in which the needs of carers can be better met. Lastly, we intend to contribute theoretically through the application of SDT in a way that intersects both labour and life in a novel context.
Care work in Australia
In Australia, there are approximately 2.8 million informal carers, including 906,000 primary carers (Carers Australia, 2022). Projections suggest that the national demand for carers will rise by 23 per cent by 2030 (Carers Australia, 2022). Currently, primary carers are not paid in the traditional way but, rather, mainly through rebates and allowances that are far from equivalent to full-time pay (Services Australia, 2021). To illustrate, according to Services Australia (2021) the fortnightly pension rate for a carer in 2022 is AUS$987.60, while Australia’s minimum wage currently stands at AUS$812.60 per week (Fair Work Ombudsman, 2022). Despite this lack of appropriate remuneration, personal care work is crucial to societal functioning and is labour heavily relied upon by citizens and communities. It should also be noted that the trusting and high-quality relationship between a carer and the individual cared for is invaluable and is likely to be hard to replicate in the paid healthcare sector. This finding was reported by Meltzer and Davy (2019), who posit that Australia’s NDIS should conceptualise relationships as relationships, rather than merely sources of informal support.
The caring role often comes at a high cost to carers. A recent report by Carers NSW (2022) found that nearly half of unpaid carers report high or very high psychological stress, while one in three do not get ‘time out’ from caring duties and one in three report feeling socially isolated in their caring role. Indeed, the caring role can affect all aspects of a carer’s life, for example, mental and physical health, social life, family relationships, freedom of choice, and financial circumstances (Rethink, 2003; Gérain and Zech, 2019). When public health disasters (for example, the COVID-19 pandemic) occur, these impacts on carers are exacerbated (Hajjar et al, 2022). Research by Onwumere et al (2021) in the UK, for example, reports that during the COVID-19 pandemic, carers increasingly reported feeling ‘abandoned’. Over 20 years ago, Marks (1998) proposed that understanding the consequences of providing care is an increasingly important public and private issue; this is no different today. Similarly, Schmitz et al (2022) highlight the importance of identifying adequate measures to ensure that individuals can continue caring without placing their own well-being and health at risk.
Essentially, the economy (as typically referred to) would be unable to function without the foundation of work provided by the ‘care economy’ (Power, 2020: 67). The care provided by carers reduces growing strain on Australia’s healthcare system. To illustrate, ‘The value of informal care in 2020’ report (Deloitte Access Economics, 2020) valued the opportunity cost of informal care (which arises when carers partially or fully withdraw from the paid labour force) at AUS$15.2 billion (in 2020) and estimated the replacement cost of all informal care at AUS$77.9 billion. In addition, informal care can significantly reduce functional decline in ageing (Wang and Yang, 2021) and improve the health behaviours of older people (Wu and Lu, 2017), suggesting that this type of care may, in certain instances, improve health outcomes for the cared for. The well-being of carers themselves is, however, increasingly under threat but is necessary in ensuring quality care. Meltzer and Davy (2019) conducted a content analysis of the NDIS Act, rules, operational guidelines and price guide to explore how these caring relationships were assessed in NDIS policy, finding that the main focus was on sustaining capacity for informal support. This is highly problematic, particularly when there is a high expectation that carers will provide quality care (Kirkman, 2011). Carers’ critical role in the well-being of those cared for is recognised in official policy: ‘the ongoing capacity of family members and carers to provide these informal supports can often be critical to the wellbeing of participants’ (NDIS Act 2022, Section 11). Despite this, the NDIS does not fund a family member to provide care, stating: ‘Funding a family member to provide supports to a participant can be detrimental to family relationships’ (NDIS Act 2022, Section 11).
Support for carers
Studies examining the impact of informal caring on workforce participation often focus on the coexistence of care and employment (Naldini et al, 2016). In this article, however, we focus on the experiences of informal primary carers who are providing care full-time and are thus currently unable to gain employment. Studies that focus on carers not currently in paid employment are relatively few but provide useful insights for understanding the unique vulnerabilities of carers and thus the nature of support that might be effective. For example, a study examining carers of people with dementia proposed that needs-assessment instruments and supportive interventions with a holistic and person-centred approach should be developed to meet their various and complex needs (Holt Clemmensen et al, 2021). Similarly, a literature review (McNally et al, 1999) found that respite – a common ‘support’ offered to carers – often fails to assist in maintaining socially supportive relationships and that a more ‘carer-centred’ approach is required.
Carer-centred educational opportunities may serve as a stimulus to carers’ autonomy and motivation by providing them with competencies and resources that are actively sought by carers themselves but sit outside their caring role. Most carer-focused programmes focus on carers’ present-day situation, providing social support or opportunities to learn caring skills, but a more holistic approach is likely to be beneficial if carers are to feel confident and competent to re-enter the paid workforce, should they have the opportunity (and wish) to do so. Often, carers reach a point when their caring role becomes more manageable or ends, confronting them with decisions about their future and, in particular, their career. To prepare for this, providing opportunities for carers during their care role can: (1) facilitate improved well-being by supporting autonomy, competence and relatedness; and (2) contribute to upskilling and resource acquisition in contexts separate from their caring situation. Raiber et al (2022) found that caring intensively was negatively related to employment. Offering carers opportunities to engage in training or education is thus likely to support their confidence and employability post-caring. Our study links SDT to such a training opportunity in order to explore how such experiences support carers’ motivation and well-being.
Theoretical framework
SDT is a theory of ‘human motivation, development, and wellness’ (Deci and Ryan, 2008: 182), according to which there are three universal psychological needs that must be satisfied for psychological health and effective functioning: autonomy, competence and relatedness (Deci and Ryan, 2008). SDT differentiates autonomous and controlled motivation, particularly through illustrating the differential effects of intrinsic versus extrinsic rewards (Deci and Ryan, 2008). Intrinsic motivation is the end goal, whereby individuals thrive when socio-environmental factors support the development (that is, the integration and internalisation) of extrinsic motivation. Autonomy-supportive conditions are needed to integrate and internalise extrinsic motivation (Gagné and Deci, 2005). The need for autonomy signifies the experience of behaviour as self-endorsed with reflection, rather than coerced and pressured (de Charms, 1968). Competence reflects the need for individuals to feel that their efforts are effective and proficient in accomplishing desired outcomes (Patrick et al, 2007). Positive feedback, for example, satisfies a person’s need for competence and increases internal motivation (Deci, 1971). Olafsen et al (2017) posit that when the need for competence is frustrated, it results in perceived ineffectiveness and an inability to achieve desired outcomes. Furthermore, need dissatisfaction is different from need frustration; Trépanier et al (2015) found that investigating basic psychological needs in terms of satisfaction and frustration may offer a more nuanced insight into how factors associated with the work environment may impact employee functioning. Finally, relatedness refers to the degree of social connectedness an individual needs (Lin, 2016). While autonomy and competence have been identified as the most powerful stimuli for intrinsic motivation, research posits that relatedness also contributes (Deci and Ryan, 2008). According to Ryan and La Guardia (2000), intrinsic motivation is likely to thrive in situations in which individuals experience a strong sense of secure relatedness. When this need is frustrated, it can result in a lack of connection with others (Olafsen et al, 2017).
Research context
At an institutional level, carers are a group often forgotten and underemphasised in policy decisions and funding plans (Katbamna et al, 2004). Applying SDT to the context of carers in Australia helps us explore and identify need-supportive conditions that may motivate carers and contribute to their well-being, both in life and in the care they provide. Such knowledge is not yet well established or understood. In our research context, carers were presented with an opportunity to engage in a funded training or education programme, and had agency over the type of course they selected. Engagement with the course represented a potential means of satisfying their psychological needs because: (1) the programme’s self-directed design provides opportunities to exercise autonomy; (2) the programme advances skills and abilities, fostering perceived competence; and (3) the programme is a shared experience, providing opportunities for connection and relatedness with others. In the study, we examined how the Opportunity supported the motivational needs of personal carers, a marginalised societal group existing on the periphery of the labour market.
Method
To gain an in-depth understanding of the experiences, motivations and well-being of carers, we developed a qualitative data collection method using in-depth semi-structured interviews. Carers were recruited with the assistance of an industry partner and in collaboration with two carers’ associations: one in Western Australia; the other in Queensland. Ethical approval was obtained from the University’s Human Research Ethics Committee in line with the Australian Code of Ethics. The purposively selected sample included 20 carers in Study 1 (pre-training) and 16 in Study 2 (post-training). Eight Study 1 participants also participated in Study 2. Other Study 1 respondents (in communications with the industry partner) indicated that they were too busy to participate in Study 2, so some new respondents were included in Study 2. Respondent pseudonyms are presented in Table 1. Interviews were conducted using Zoom and lasted 25–50 minutes. Using Zoom facilitated engagement with carers in remote or interstate locations, or who were unable to leave their home.
Respondents and their demographics in this study (identified by pseudonym)
| Pseudonym | Age | Cares for | Live in | Length of caring time |
|---|---|---|---|---|
| Judy | 43 | Son | Y | 5 years |
| Richard | 41 | Wife | Y | 6 years |
| Lisa | 46 | Children | Y | 12 years |
| Jim | NA | Parents-in-law | Y | 2 years |
| Jane | 53 | Daughter | Y | 2 years |
| Mary | 49 | Son | Y | 7 years |
| Beth | 60 | Husband | Y | 10+ years |
| Joe | N/A | Mother | Y | 3 years |
| Nelly | 60–69 | Husband | Y | 4 years |
| Chris | 40–49 | Daughter | Y | 21 years |
| Simone | 48 | Parents | Y | 2 years |
| Susan | 41 | Son | Y | 12 years |
| Fiona | 34 | Son | Y | 17 years |
| Sylvia | 48 | Daughter | Y | 17 years |
| Zara | 50–59 | Daughter | Y | 17 years |
| Ben | 40–49 | Mother | Y | 11 months |
| Holly | 42 | Husband | Y | 1 year |
| Kim | 40–49 | Ex-father-in-law | N | 5 years |
| Rebecca | 50–59 | Son | Y | 10 years |
| Marni | 50 | Parents | N | 2+ years |
| Cristina | 61 | Husband, son and father-in-law | Y | 10+ years |
| Klara | 40 | Daughter | Y | 17 years |
| Rhiannon | 35 | Mother | Y | 6 years |
| Zoe | N/A | Parents – now deceased | Y | N/A |
| Angie | 40 | Son | Y | 7 years |
| Carmen | 54 | Daughter | Y | 4 years |
| Gavin | 60 | Wife | Y | 12 years |
| Maria | 44 | Mother | Y | 2 years |
Research procedure
Participants in Study 1 were asked to reflect on their caring role to understand the challenges they face, their experiences and their general well-being, including the presence or absence of self-determined forms of motivation. In Study 2, the focus was on participants’ experiences of the Opportunity and how this supported fulfilment of their need for autonomy, competence and relatedness. The two phases were useful for understanding how carers’ experiences and perceptions changed in response to the Opportunity. Questions posed (in both phases) included:
Reflecting on your current experience as a personal carer, how do you feel about being a full-time carer?
What is your plan going forward?
What are your feelings about re-entering the workforce?
What has changed for you since undertaking the training?
Coding and analysis
Data were thematically analysed using Nvivo software, and a broad initial coding frame was developed from the SDT dimensions to initiate insights and develop meaning. The authors engaged in a shared, iterative approach to data analysis. Iteration is considered a reflexive process and is a method of engaging with the data to refine understandings of a phenomenon (Srivastava and Hopwood, 2009). In this process, the researchers visited and revisited the data, linking them to insights experienced and reported by respondents. Despite representativeness concerns (a characteristic of qualitative research), the narratives and experiences shared provide insights into carers’ roles that need to be addressed to ensure their well-being, as well as that of those they care for.
Findings
Self-determination pre-training programme – Study 1
‘I’ve been out of the workforce for so long, and I’m getting older, and I want something else other than just looking after my family. I want something for me. I want to be productive as well. I’ve been doing nothing for so long. I know keeping house and looking after – I know that’s important, but I need the social aspect as well, like meeting people, thinking outside of just my house.’
Overall, carers’ need for autonomy was frustrated by being unable to undertake activities at a time of their choice and having to adjust to the schedule of the person they cared for. Thus, in relation to SDT, the contextual conditions for carers placed limitations on their autonomy, competence and relatedness.
Autonomy
Carers’ lack of autonomy was clearly communicated in the interviews. Some carers revealed that if they had the option, they would prefer to be doing something else than care for their loved one. They revealed feeling guilty voicing this sentiment; one participant, Richard, became very emotional. Overall, carers reported feeling overwhelmed by the caring responsibility; most felt that they had no alternative, resulting in frustration of their need for autonomy. Kim was the only carer who did not live with the person she cared for, instead visiting him several times a week. Compared to carers who resided with the person they cared for, Kim had more autonomy over how she separated her life from her caring role. Carers who lived with the person they cared for reported ‘losing themselves’ and their own identity. They also indicated that this situation was reinforced by other individuals in their environment and wider support structures that collectively focus primarily on the person cared for. Richard explained: “Being a carer, you just get forgotten! No one wants to know you; no one talks to you. I think for the carers, your life is on hold, you’re going nowhere. I hate to say it – it’s just depressing.”
Similarly, Ben described losing himself when he commenced looking after his mother: “The thing you realise very quickly is you, sort of, almost lose your own identity when you start becoming a carer. And instead of saying things like ‘I’, you’re then saying ‘we’. It’s like you have no purpose of your own because it’s just gone.”
Competence
‘Carers are not recognised for the work that they do. Most of them are people that don’t know how to stand up. Most of them are people that wouldn’t know where to go to if they could stand up. And then the final barrier that you have is there is little or no places out there where you can stand up, even if there are people willing to listen to you.’
‘Just to get my brain switched on again to be dealing with adults, have an adult conversation, feel like I’ve got purpose again. I definitely feel, even though, of course, I have purpose, I’m a parent, but mentally I feel like I need to have purpose, I need to be able to go out that front door, start earning some cash that we can put towards the kids’ education or extra therapy or whatever it is.’
Most respondents, particularly those who had been caring for many years, questioned their employability and competitiveness in the labour market due to the time they had spent out of the workforce. They felt that potential employers would consider this a significant career break that would make it difficult to get a job, deepening their perceived lack of competence. This was encapsulated by Chris: “My confidence is shot. I’ve got to be honest with you, God forbid I actually get a job interview. What am I going to do? My confidence has just been diminished and that’s part of my depression as well and my anxiety, but it’s gotten worse.” This situation was distressing to interviewees who were seeking ways of regaining their sense of competence and confidence.
Relatedness
The psychological need for relatedness was similarly frustrated for most carers, who described being alone in their role, with no support. This situation resulted in them experiencing loneliness and, in some cases, desperation. Marni described the following feeling: “It can make you feel very isolated, and because the people that you’re dealing with are isolated, you become isolated as well, because you’re so wrapped up in that – that’s the job it is; you get consumed in it.” Participants described a multi-level lack of support from the government, carers’ associations and even family members. Joe, for example, said: “I had to resign after six months because my mum needed me at home; there was no one else to help. My older brother didn’t want anything to do with it; my other siblings didn’t really care. So, I had to make sacrifices.” They also reported feeling an extensive level of isolation. Susan explained that at her lowest points, she wanted to harm herself. She felt that it would have been extremely helpful if someone had come to check on her (rather than going through it all alone): “When I look back on that time, I think that I came close to harming myself, or a mental breakdown. But if someone comes, can see the situation, they may be able to help, or may be able to pull you back.” Realising that the programme offered to participants was designed specifically for carers gave them a feeling of connectedness, as they described previously not feeling supported.
The Opportunity
‘It’s to help carers get back into the workforce. So, you might have caring skills and knowledge, but you don’t have a certificate that goes with it because you are in a caring role. So, to be able to do that in a flexible way to help you as a carer and still keep your mind stimulated and still look forward to something in the future.’
The carers all reported feeling very fortunate being selected to take part. Simone explained her hopes for the Opportunity as follows: “Sometimes, you think you don’t have a brain anymore because all you do is vacuum and clean and cook and just do – it feels like meaningless things really, but it’s just everyday stuff. And I want to not lose the brains, I want to keep educated.”
Self-determination post-training programme – Study 2
The data collected post-training indicates that the Opportunity resulted in carers experiencing improved autonomy, competence and relatedness. As such, and as expected in line with SDT, they expressed an increased sense of well-being. We propose that while SDT comprises these three components, the Opportunity serves as a necessary external stimulus, galvanising the satisfaction of carers’ psychological needs, including those identified by Ryan and Deci (2002) that relate to a supportive environment and resources. We argue that rather than support, in the unique case of carers, a stimulus is required to meet their psychological needs, as they cannot otherwise engage in self-determined courses of action. Carers are a unique group for whom opportunities are very limited, in terms of time and finances. Carers in the study were assisted by an external party, as they could not provide this themselves. We therefore propose that due to their specific context and experiences, an external stimulus is crucial to support carers’ autonomy, competence and relatedness.
Autonomy
‘When you’re a carer, you don’t actually get the chance to do anything for yourself and you’re always putting everybody else first, you’re always thinking about everybody else. So, I think getting a certificate, doing stuff to help yourself but not having that financial burden, trying to get it sorted … that’s, like, a sense of accomplishment, and it’s a good feeling because it’s something that doesn’t happen very often when you are a carer.’
‘The programme made a big difference, in as much as it changed focus just purely on caring for mum. It’s to also: “Hang on, I need a plan for myself and what am I going to do?” So, down the track, I’ll actually have some qualifications that I can use, rather than having no current experience and no education, no qualification.’
Competence
‘It makes me feel more confident and job ready, with the help that I’ve had; it’s taught me to be more empathetic, more job ready with the new technology. Like, I don’t know how to do all this – doing all the paperwork, that was all new. That’s another skill that I’ve learned.’
The carers experienced behavioural changes as they accumulated employability skills, offering support to SDT, which postulates autonomy and competence as necessary conditions for maintaining motivation (Deci et al, 2017).
Relatedness
‘It’s the connection outside of the bubble that you develop when you’re caring for someone intensely, so it opens up new experiences. You gain a confidence outside of that little bubble that you’ve been in, exposure to new experiences, where you have to do things that you haven’t done before, and just getting that connection back with people, which is really – because the caring I found anyway was very isolating because it’s so intense.’
Deci and Ryan (2008) argue that individuals seek relatedness because they want to feel connected to significant others. Our respondents reported enhanced well-being due to their increased sense of relatedness, as illustrated by Cristina, who described working with other people: “It makes a huge difference to how you feel, how happy you are during the day … it just fills me with pride to be giving back but also with a fierce determination to never go back to that situation again.” As a function of relatedness, Cristina ascribed the improvement in her mental and psychological well-being to her integration in social networks.
Discussion
‘A lot of it has just been flying on the seat of our pants, fluffing our way through some things because I’ve just not had the mental capacity to take on NDIS as well. It’s not an easy programme, NDIS is not that simple. I actually wish they’d go back to the old system; the old system worked perfectly.’
Overall, this study finds support for the autonomy, competence and relatedness constructs underpinning SDT through experiences tied to the Opportunity. This need fulfilment also supported carers’ well-being and quality of life. As such, carers can be supported through the creation of a need-supportive opportunity, such as (in this case) the bespoke training programme for carers.
Pre-Opportunity, carers’ own psychological needs appeared frustrated and to be negatively affecting their mental health. Interviewees expressed self-doubt and feeling abandoned, lonely, hopeless and depressed, with a bleak outlook for their employment and future. Our study explored the efficacy of the Opportunity further by investigating how the programme supported carers’ experiences of autonomy, competence and relatedness. Carers reported that they felt more confident about a successful return to the workforce and that this heightened their feelings of self-efficacy and mental well-being. Relatedly, our findings reiterate the degree to which social context (for example, the interpersonal atmosphere outside their caring role) supports carers’ feelings of autonomy and individual competence. Pre-training, carers reported a lack of autonomy over their lives. The decision to care for a loved one had often been made of necessity, rather than a free choice. In some instances, when caring had lasted for many years, carers said that they wished somebody else could take over their caring role. This situation resulted in significant adverse well-being, with carers describing being unable to do things they had enjoyed and loved pre-caring. Their carer role now determined their ability to go and do things for themselves. During and after training, carers reported “finding their voice” and building their “self-worth” and “confidence”. It became clear that despite their lack of autonomy in their caring role, the Opportunity supported their feelings of having autonomy over one aspect of their lives. This increased their sense of autonomy, albeit in a small way, with a discernible impact on their motivations and well-being.
In addition to self-doubt, carers also expressed a lack of purpose and external recognition. Judy, for example, used to work as a psychologist but felt that she was now considered “just a carer”, who was mostly ignored and not listened to. Research suggests that payment for care recognises and raises the status of carers (Grootegoed et al, 2010), contributing to their need for competence, which was frustrated for the carers in the current study. This finding conflicts with the view (seen in NDIS policy) that providing payment for care can be detrimental to family relationships. Forcing carers to provide care without appropriate remuneration results in financial stress, affects family relationships and contributes to frustrated competence. Many respondents were keen to gain employment to better provide for their families. Additionally, many were worried about life after caring and their chances of gaining employment following a break, with skills and résumés outdated. Pre-training, carers’ psychological need for relatedness was frustrated. All except one (who did not live with the person cared for) described feeling abandoned by institutions, family and friends, resulting in feelings of severe isolation and, in some cases, depression and desperation, particularly when caring for an extended period. The Opportunity offered participants social networks and alternative perspectives that they identified as contributing to their improved well-being.
Most studies use SDT quantitatively; this study took an alternative approach in exploring if three basic human needs (autonomy, relatedness and competence) were met for the carers interviewed. Using SDT as a lens, our findings offer alternative ways in which carers can be better supported – not only in their mental and physical health, but also in preparation for a life beyond caring, thereby reducing the anxiety associated with the prospect of returning to the workforce. This outcome has significant implications for labour market prospects once their caring role ends and further skills have been developed through engagement in training.
Currently, carers lack control over facilitating their own autonomy-supportive conditions for the fulfilment of autonomy, competence and relatedness. External support, from governments, carer organisations and other relevant bodies, is needed to provide resources to meet carers’ needs. Carers need more frequent and formal recognition in public discussions, as well as accurate representation. Our findings suggest that offering carers individual opportunities may be one way in which their well-being can be supported. It is our hope that, over time, this attention to carers’ needs will allow them more agency to seek out resources and support. Through identifying the unique experiences and needs of carers, this study strengthens the recognition of carers as an important and specific group in Australian society.
While our sample size was small, the researchers ensured data saturation was achieved in both studies. Furthermore, the exploratory nature of the study made it crucial to collect in-depth data to gain an insight into the experiences of carers involved with the Opportunity. The study findings highlight suitable areas for future research. New studies are needed on the long-term impact of training opportunities for carers, particularly in relation to their well-being and workforce participation. Such studies can serve to inform national policies and institutional structures which recognise that enhancing carers’ well-being also ultimately supports those being cared for and, as such, society. This line of future research also needs to consider the impact of such opportunities on those cared for in order to ascertain if any benefits or, conversely, adverse effects on them can be identified.
Practical implications
Our findings have important implications for governments, departments and care organisations, as they demonstrate that the provision of an external opportunity may improve the well-being of a significant number of carers who, by caring for a loved one, are making significant multi-level contributions to Australian society. The undervalued position of carers in society likely precludes them from having much empowerment or control in enhancing their own autonomy, competence and relatedness. Governments and other institutions (for example, education and training organisations) could play a timely and pivotal role in fulfilling these needs for carers. This would ideally build empowerment for carers over the long term and reduce pressure on institutions to ensure carers’ health and well-being in the future. Carers who do not experience autonomy, competence and relatedness may, despite their goal to return to the workforce, struggle with their confidence in a way that inhibits their motivation to apply for work. Through the Opportunity, carers were more likely to feel motivated and confident about their future employment opportunities and reintegration in the workforce once their caring role ceases. The Opportunity was a pilot programme; our findings support its continuation for a larger group of carers.
Conclusion
Viewed through the lens of SDT, this article has contributed to contemporary knowledge by focusing on the largely unexplored experiences and needs of carers. Our findings support the tenets of SDT, finding that the opportunity to engage with training supported carers’ needs for autonomy, competence and relatedness, and, overall, improved their motivation and general well-being. Although the carer role does not support their autonomy, culminating in a general lack of well-being, we found that by providing an external stimulus as an extension of SDT, carers’ sense of agency could be supported, thereby improving their well-being. This article has contributed empirical knowledge on the experiences and needs of carers, an important, yet often forgotten, group of individuals who selflessly provide care for the most vulnerable members of society. Neglecting their well-being shines a light on how care work is devalued in society. As most people, at some point, will depend on others for care, this is a short-sighted view, neglecting the immense sacrifice carers make. Due to the personal relationship between the carer and person cared for, the element of choice (as per our definition) is removed. Carers in the study did not want to outsource care for their loved one and, as such, made career and well-being sacrifices to undertake this task. Findings clearly indicate that an external stimulus can serve to empower carers to make decisions about their own lives and futures. This offers a win–win situation by promoting the ongoing well-being of carers and, in consequence, of those being cared for.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Conflict of interest
The authors declare that there is no conflict of interest.
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