‘I Want People to Know out There, Just How Many Caregivers Struggle Between Work and Home’: Feminist Intersectional Research Exploring Caregiving Lived Experiences in New Zealand

ABSTRACT

Issue Addressed

Caregiving carries risks to caregivers because of the burdens associated with it, including impacts on caregiver health and wellbeing. It also has the potential to increase existing health inequities for women and Black, Indigenous and People of Colour (BIPOC). This exploratory research asked: What are the lived experiences of women and people who are double‐duty caregivers (those with both formal and informal caregiving roles), what are the impacts on health and wellbeing and how do socio‐cultural gender roles impact these experiences?

Methods

A qualitative feminist intersectional approach was used in this study. Data were collected through individual semi‐structured interviews with four women who were double‐duty caregivers, and analysed using reflexive thematic analysis.

Results

Health and wellbeing were seen to be affected by caregiving roles and responsibilities, which were influenced by socio‐cultural pressures. These impacts were either alleviated or compounded by intersections of caregivers' identities with wider social systems of power.

Conclusions

Double‐duty caregivers need more support and resources to do their jobs well and look after their own wellbeing.

So What?

The need for caregivers will only increase due to ageing populations. Findings from this research point to intersectional inequities in caregiver burdens, which need to be addressed by health promotion as a matter of social justice.

1. Introduction

1.1. Care and Its Consequences

Care is an intrinsic part of being human and of being in relationship with others, necessary for human wellbeing and the survival of our societies worldwide [1]. One of the definitions of care is that of work or labour [2]. The concept of caregiver burden has been developed to recognise the toll that caring can take on the person providing care. This can be defined as ‘the level of multi‐faceted strain perceived by the caregiver from caring for a family member and/or loved one over time’ [3]. This burden of care is complex, and can include mental and physical health impacts [4], social isolation [5], financial strain [6], time poverty [7] and decrease in quality of life [3]. These are serious potential consequences of caregiving, so it is important to consider who provides caregiving in society and who may therefore be at risk of carrying these burdens of care. The following section exploring caregiving will lead to a focus on women and people who are double‐duty caregivers, a feminist and gender‐inclusive term ¹ for caregivers who have both formal (paid) and informal (unpaid) caregiving roles [8].

Historically, care and caregiving have been seen as women's work, with traditional gender roles of care greatly influencing who participated in care in society [9]. Care and caregiving have also been viewed historically as roles for women of colour, developed out of societal structures of slave labour that have shaped the lack of value placed on domestic caring roles [10]. Black and Indigenous women/people of colour (BIPOC) have had specific experiences of gendered, racialised and colonised roles of care resulting from the ways that their different identities intersected with societal power structures [11]. Feminised roles and expectations of caregiver responsibilities have largely endured; women currently perform up to 81% of informal (unpaid) caregiver roles globally [12], and occupy up to 90% of formal (paid) caregiving roles throughout OECD countries [13]. Owing to the assignment of caregiving roles within particular socio‐cultural paradigms, both informal and formal caregivers are more likely to be women [14], BIPOC and have a low socio‐economic status [11].

1.2. Previous Research on Gendered Roles of Care

The research foundations for this current project go as far back as the 1960s, as researchers have sought to understand the experiences and consequences of caregiving. A quantitative study by Cohen et al. [15] identified that gender, race/ethnicity and employment status all contribute to differential reports of caregiving intensity and workloads, and recommended that detailed intersectional research is needed in the area of caregiver health. Intersectionality is a framework created to understand the ways in which gender, race/ethnicity and other aspects of identity intersect within societal structures, resulting in inequitable oppression including burdens of care [16]. Ghosh et al. [5] studied the intersectional aspects of caregiver burden for informal caregivers of adults with complex health needs in Canada. One hundred and ninety‐four informal caregivers were asked about their caregiver experiences and their identities in terms of age, employment, gender, education level and social life, and results showed that caregiver burdens were reported to be heavier for women due to conflicts with caring and working roles [5]. Higher caregiver burden reports were also found for those participants who had lower incomes and higher financial stress, and significantly higher for those participants who reported their social lives impacted by their caregiving roles [5]. There was no consideration of the intersections of ethnicity or culture in this research.

The consequences of combining work and caregiving roles can increase risks of multiple burdens of care, and this is particularly true when the paid work is also a caring role [17]. Double‐duty caregiving, defined as caring both informally and formally [8], has been the subject of academic study as researchers have attempted to understand the impact of multiple burdens of care. DePasquale et al. [18] studied nursing assistants in the United States who were balancing formal and informal caregiving roles. Their participants reported many instances of emotional exhaustion and pressure to sacrifice themselves to care for others, as well as conflicts between roles. There was no mention or analysis of gender, in spite of the overwhelming majority of participants being women, and an even higher proportion of women carrying out informal caring roles [18].

Literature on double‐duty caregiving up to this point has focused almost exclusively on nurses who are also informal caregivers [19], and there is little available research on paid caregivers who also care informally. This is concerning because paid and unpaid caregivers are likely to have lower levels of education, have a lower socio‐economic status and belong to ethnic minorities, immigrants, Māori or Pasifika compared to nurses [10, 20, 21]. All of these traits are linked to determinants of health that could exacerbate existing health inequities [22], and where caregiving impacts on health and wellbeing are likely to be more significant.

1.3. The Present Study

This research project asked the question: What are the lived experiences of women and people who are double‐duty caregivers, what are the impacts of these experiences on personal health and wellbeing and how do socio‐cultural gender roles impact these experiences?

2. Methods

2.1. Methodology

The epistemological foundations of this research project are qualitative feminist intersectionality, which sit within a critical constructionist viewpoint [23]. The focus on women and people who are double‐duty caregivers in this research project was developed from a feminist paradigm as described by Leavy and Harris [24]; feminist research begins with an assumption of gender inequalities and a commitment to social justice and equity. The feminist ethic of care was also a focus; it posits that care is a highly important and needed human activity, and that the devaluing of care because of its traditionally feminine role needs to be challenged, both in the social world and in the political world [9]. There has been much previous research identifying inequities in caregiver burden [25]; therefore, considering the lived experience in this project also included intersectionality, as this framework considers the interactions between people's identities and wider social systems of power [5].

2.2. Setting, Participants and Recruitment

This research project was carried out in Taranaki, New Zealand, in both aged residential care (ARC) facilities and regional health care services where caregivers were employed. Purposive sampling was carried out through recruitment; ARC facilities were approached with information, and the researcher spoke about this project on the local radio and in the local newspaper. The goal of this purposive sampling method was to reach double‐duty caregivers at their places of work and to ensure appropriate participants were recruited who qualified as double‐duty caregivers. Four women who were employed as caregivers for at least 20 h per week and who also identified as having a significant unpaid caregiving role for family members were recruited for this study. The significance of the unpaid caregiving roles was determined by the participants themselves, based on the impact these roles had on their lives. The small sample size was appropriate for this small exploratory research project. Two of the participants identified as Māori, one identified as NZ European and one identified as Filipino.

Participant demographics.

Participant pseudonyms	Ethnicity	Age group
‘Ann’	Māori	45–60 years
‘Sophie’	NZ European	45–60 years
‘Jade’	Māori	45–60 years
‘Mia’	Filipino	Under 30 years

2.3. Data Collection

Informed consent was obtained before data collection began. The data were collected through individual semi‐structured interviews, conducted in person. The interviews were audio recorded and transcribed by the researcher. An interview guide was used to prompt discussion and to ensure key topics were addressed (see Appendix A for interview question guide). At the conclusion of the interviews, participants were offered a koha (donation) of a $20 supermarket voucher in appreciation of their time and effort.

2.4. Data Analysis

The four interviews, once transcribed, were analysed using a reflexive thematic analysis approach as developed by Braun and Clarke [26], following a six‐stage process to refine the data into three themes. Throughout the analysis, attention was paid to intersectional aspects of the data, including ethnicity and age. Trustworthiness and dependability were optimised through a systematic and progressive approach to the research, which was well‐documented and recorded at all stages of the process. Use of theory and prior research supported and validated the research planning, and systematic and thorough thematic analysis also increased the validity of the findings. Transferability was encouraged through the use of purposive sampling, which ensured the participants' situations were appropriate for the focus of this research.

2.5. Ethical Considerations

This research project was approved by Victoria University of Wellington's Human Ethics Committee (Approval Reference Number 30276). All efforts were made for this research to be conducted in as ethical a way as possible, adhering to guidelines from New Zealand's National Ethics Advisory Committee [27]. Autonomy and individual responsibility were maintained through the use of informed consent, and participants were aware that they were able to withdraw consent at any time up until the data analysis of the interviews was completed. Privacy and confidentiality were maintained through the secure storage and use of data. Pseudonyms were used in this report to protect privacy, and as much as possible, all identifiable data were removed prior to publication. Justice and benevolence were promoted by giving all participants equal opportunity and encouragement to tell their stories, and by focusing on this group of participants as people experiencing potential injustice whose voices need to be heard. The interviews, as caring spaces, were an important feature of the research process to avoid adding any additional burdens onto the participants. Human vulnerability and personal integrity were supported by my attitude of support and non‐judgemental positive regard, along with options for professional follow‐up if any distress occurred for participants.

3. Results

3.1. ‘I'll Always Be There, If People Need Help’: Caring as Part of the Fabric of Life

The participants of this research project described the all‐encompassing nature of caregiving in their lives. Three sub‐themes are identified here that demonstrate the multidimensional, all‐encompassing and sometimes contradictory nature of caring in the lives of women who do double‐duty caregiving: pride in caring work, relationship‐driven care and lack of choice in caring.

3.1.1. Pride in Caring Work

The women in this study who did double‐duty caregiving described caring as a source of pride in their lives and a positive part of their identity despite the challenges they faced. Caring skills and knowledge were seen as particularly important in formal caregiving roles, where caring for elderly and vulnerable people helped to keep those people safe, happy and well. Participants felt satisfied when they cared well for other people.

3.1.2. Relationship‐Driven Care

Participants also explored the central importance of relationships that underpinned their care work, including both love and duty woven through their caring experiences. In exploring her gendered care role in the family, Ann discussed, ‘With my brothers, I think it's because I'm the youngest, I don't know, I just want to look after them, I want them around a bit longer.’ Values of the importance of family care were a strong motivator and imperative for participants to inhabit caregiving roles.

3.1.3. Lack of Choice in Caring

Participants also described a lack of agency and choice in relation to their double‐duty caregiving. In making sense of how they had come to be double‐duty caregivers, participants described their sense of responsibility and obligation to family members. Participants talked about feeling like they had to take care of family members, often reporting that there was no one else who could do it, so it was up to them. This sense of responsibility had wide‐reaching effects in the lives of participants. Strong cultural values of the expectation and duty to care for family members were expressed in the interviews with Māori and Asian migrant participants, but not in the interview with the NZ European participant.

3.2. ‘I'm Always Last’: The Cost of Caring

As participants reflected on the nature of double‐duty caregiving, they described the multitude of ways in which double‐duty caregiving impacted their entire lives.

3.2.1. Emotional and Financial Pressure Caused by Demands on Time

Participants spoke of being needed by family members and also of having responsibilities at work, both of which demanded their time. Ann explained, ‘I want people to know out there, just how many caregivers struggle between work and home.’ These multiple care obligations caused participants to feel pulled in different directions at once. Hours available for paid caregiving were restricted at times due to informal caring demands. This impacted income, and the increase in the cost of living was identified by participants as an additional stressor. Participants reflected on some of the things they had been missing out on because of a lack of disposable income; for example, getting a professional haircut or going on holiday.

3.2.2. Relational Conflicts

Conflicts and disagreements within family situations were a common result of double‐duty caregiving for participants. There were differing views within families over who should take on roles and responsibilities for caring. Family members being cared for sometimes felt participants were interfering, and did not always want to accept care. Participants expressed anger and resentment at times with being placed in roles of responsibility by other family members, which had the potential to negatively impact their family relationships. Sophie exclaimed, ‘I'm really pissed off that my brothers aren't helping.’

3.2.3. Tiredness, Stress and Impacts on Health

There were many ways in which double‐duty caregiving impacted participants' health and wellbeing. Formal caregiving within healthcare services meant rotating shift work for participants, which had a significant impact on levels of tiredness. Age was a factor in participants' ability to manage shift work and changing work hours, and exhaustion was experienced as a result of competing care demands. Stress and anxiety were common emotions that participants described as a result of double‐duty caregiving. Ann described her anxiety over her brother as:

Here [at work] I can walk away from it I guess, go home and forget about it, but at home I can't. It comes to work with me. The boss tried telling me, you know, ‘just leave it at the door when you walk in’. I just can't do that. You worry. I'm here and what is he doing?… if I don't ring him he won't get up, won't eat, and he won't get his medications on time.

Caregivers in rest homes had expanded responsibilities sometimes out of their scope for their role, including being in charge of other staff, residents and medication. Participants did not have adequate training for this responsibility, which left them feeling unsafe in their role.

The other significant impact of double‐duty caregiving was the resulting self‐neglect of participants' own health. Participants had very little time available to take care of themselves, and described putting themselves last on their list of people to care for. Participants talked about the pressure they were under to care for other people, and the way that made it difficult to have a work–life balance due to feeling like people always wanted more help and care. Sophie explained, ‘it's a really important role, which is sometimes not just the role is it, you're always doing extra, and they always expect.’ This theme was discussed in more depth in the two interviews with Māori participants compared to the Asian migrant and NZ European participants.

3.3. ‘If We Had Support, It Would Be Better for Us’: Support That Makes a Difference

Participants perceived clear links between the support and care they received and their abilities to manage and cope with double‐duty care burdens through sharing the load. When discussing social and structural support, three subthemes were discovered: support from family and friends, working conditions and management support and lack of support from services.

3.3.1. Support From Family and Friends

Close connections and support from friends and family made a meaningful difference to the stress and strain of double‐duty caregiving for participants. This support was offered in a variety of ways, ranging from emotional support and encouragement to practical help. Nearly all the support participants received came from other women: either female friends, sisters or mothers. When this social support was lacking in participants' lives, they felt more isolated and had a greater sense of caregiver burden as they did not get to have a break from caring. Ann described her isolation in caring for her dying mother: ‘My mum got sick … I had to give up school to go look after her … none of them [her siblings] lived here … it was horrible, I had no one to talk to.’

3.3.2. Working Conditions and Workplace Support

Aspects of working conditions that either improved or worsened participants' experiences of double‐duty caregiving were related to the resources they were given to do their jobs. These resources included adequate staffing for workload requirements, enough time to do the job well and training to be sufficiently skilled for caring tasks. Helpful work colleagues made a big difference: sharing the load, encouraging each other and providing social connections for each other. Often the most helpful workmates were those who understood the participants' family situations because they came from the same ethnic or cultural backgrounds. Supportive workmates mentioned by name were always women, reflecting the gendered nature of caregiving, both formal and informal. Supportive bosses who were flexible and understood participants' family situations made a big difference to participants' ability to juggle multiple caring roles, and helped to reduce conflict between those roles. Sophie explained that in her experience caregivers are ‘underappreciated, undervalued. Used, is the word’. When organisations did not value caregivers or consider their lives outside of work, caregivers were expected to work unreasonable hours. Caregivers described times when work management did not understand family caring responsibilities. This theme was discussed in the three interviews with Māori/Asian migrant participants, but was absent in the interview with the NZ European participant.

3.3.3. Lack of Support From Services

None of the participants in this research project reported receiving any regular help from healthcare or social services for the family members they were caring for. They spoke of challenges in trying to navigate the healthcare system and different government services when they needed them. The two participants who were Māori both described experiences of culturally unsafe care, which suggests a lack of culturally appropriate services for Māori and their family/whānau. Ann described her brother's lack of trust in services as:

He got sent back there [hospital] this year, and he walked out of the hospital, so I had to go there and find him or they were going to ring the police … they asked him why he walked out, and it was all about a pill, a blood thinning pill, that he reckons that's what killed my mother, that's why he went all crazy.

Previously unsafe care and traumatic experiences with healthcare services meant that participants were more likely to be avoiding healthcare and government services.

4. Discussion

4.1. Women's Lives Burdened by Care Roles

4.1.1. Gendered Reality of Caregiving

Specific experiences and stories in these research findings describe the realities of women caregiving within the context of gendered lives in society. Informal caring was strongly grounded in relationships, and the sense of gendered familial responsibility those relationships entailed meant that participants felt they had no choice in being carers for family members. These strongly gendered care roles are a finding that is echoed in much previous research [25, 28, 29]. Participants discussed feeling pressure to care for family members and others, and described how they often put themselves last as a consequence of fulfilling others' expectations. Participants described ongoing feminised roles of care that put pressure on them to inhabit caregiving positions.

4.1.2. Stress, Exhaustion and Self‐Sacrifice

Participants described how juggling multiple care roles resulted in stress, pressure and conflict, as competing needs put significant strain on all areas of their lives. This dynamic has also been identified in other research studies on double‐duty caregiving, both internationally and in New Zealand [19, 29]. Financial pressures were present for participants and a significant contributor to the need to do paid caregiving roles alongside their informal caregiving. Women double‐duty caregivers in this study reported feeling tired, stressed and anxious. They also discussed situations where they were put in unsafe work situations, and ways in which they neglected their own health because of a lack of time and energy. All participants spoke of exhaustion due to competing demands, which left them with little energy to take care of themselves. Again, these findings affirm other research studies that have described the high risk of caregiver burden and burnout [8], and the psychological stress, health concerns and role conflicts experienced by double‐duty caregivers [29]. DePasquale et al. [18] found emotional exhaustion and pressure to self‐sacrifice common experiences of double‐duty caregivers; however, they did not analyse the impacts of gender or socio‐cultural expectations on caregiver burdens. This research project echoes these findings and goes a step further by considering how socio‐cultural gender roles impact on these experiences through feminist intersectional analysis.

4.1.3. Intersectionality

An important contribution of this research study to the existing literature is the use of feminist intersectional analysis. This analytical strategy enabled an exploration of the ways in which caregivers' positioning on different axes of oppression and marginalisation along race, class and other lines created differential double‐duty caregiving experiences and impacts on health and wellbeing. Gender and indigeneity/ethnicity intersected to impact the likelihood of caregiving roles for these participants. For both Māori and Asian migrant participants, women were expected to care for family members as a cultural norm, and they expressed a high sense of duty towards their family. The potential for poor health outcomes for Indigenous and migrant populations is high due to colonisation and complex structural systems that privilege the White majority [22], so caregiving in these contexts has the potential to carry with it high burdens of care. Māori and Asian migrant participants were also more likely to express concern that their workplace management did not understand their obligations to their families and did not provide support to help them balance their different caregiving responsibilities. Māori participants also shared stories of previous instances of culturally unsafe care for family members, which led to a distrust and avoidance of support services. Previous research has found that culturally unsafe support services for caregivers greatly increase caregiver burdens [30]. These findings support the idea that intersections of gender and indigeneity/ethnicity may play an important part in the lived experience of double‐duty caregiving, particularly when cultural values clash with Western structures of caregiving that do not allow for culturally appropriate care or support [30].

4.1.4. Te Tiriti o Waitangi Considerations

Māori cultural values of care for family mean that not only are Māori women more likely to care for family members, because those family members' health is more likely to be compromised due to colonisation, but also that the burdens of care are likely to be greater [31]. Intersectional findings from this study support these theories, as the two Māori participants described heavy burdens of care as a result of their gendered and cultural care roles both with family and at work. They also described fewer resources available to help them manage the impacts of double‐duty caregiving, financially, relationally and in terms of support services. There is much that is not yet known about the experiences of Māori women double‐duty caregivers, due to a lack of culturally competent research and the complexities of informal caregiving within socio‐cultural contexts [21]. This is an area that needs attention, as it is both a social justice issue and an imperative from Te Tiriti o Waitangi.

4.2. Implications

4.2.1. Valuing and Supporting Caregivers

Double‐duty caregivers can be carrying multiple burdens of care that impact their lives in serious ways, and sufficient care is not being taken to ensure their health outcomes are as positive as those they care for. The ethic of care emphasises the importance of valuing care and caregiving as work that is crucial to the survival of the human race [32]. Caregivers want to be valued for the work they do, as voiced in this research project; participants wanted to tell their stories so that people would hear what life is like for them. In considering the impact of current working conditions for formal caregivers as described by participants in this research, an obvious implication is the need for further health sector reforms to value caregivers more and resource them to do their work safely and sustainably. Participants described the caregiver workforce as overworked, understaffed and under‐resourced, all of which impact significantly on caregiver health and wellbeing. Working conditions need to improve for formal caregivers so that they can work safely and competently, with the ability to have a work–life balance. Workplaces also need to be more flexible and accommodating when it comes to family and cultural responsibilities, so that caregivers can take care of family members without this increasing role conflicts and exhaustion levels. Double‐duty caregivers are a diverse population group and at this point there is a lack of research available in New Zealand on who they are and what they need.

4.2.2. Improving Inequities

Findings from this research project suggest that women and people double‐duty caregivers' identities intersect with wider social structures of power to create specific experiences that directly impact health and wellbeing. Owing to socio‐cultural expectations of women to take on caregiving roles, women are more likely to become double‐duty caregivers [33], and these experiences impact education, employment and financial stability [25]. Double‐duty caregivers, who may struggle financially and lack resources to take care of their health, are likely to have poorer health outcomes. These findings suggest that double‐duty caregiving has the potential to worsen health inequities, which is an issue of social justice. Gender and ethnicity already contribute to health inequities within wider social and political power structures [34], and double‐duty caregiving has the potential to compound both, to the detriment of caregivers. Māori participants in this study had experiences of double‐duty caregiving that demonstrated the impact of colonisation and social determinants of health on burdens of care, which together have the potential to increase already existing health inequities [35].

4.3. Limitations

The major limitation of this research project was its size and scope; as an exploratory project, the data gathering was limited both in terms of the amount of time spent with participants and the number of participants who took part in the project. There are some inherent challenges associated with doing research with caregivers, which have led to certain limitations for this project. The healthcare worker crisis due to COVID‐19 [36] made it very challenging to find women and people double‐duty caregivers who had the capacity to be participants. An ongoing concern is that double‐duty caregivers with the heaviest burdens of care did not have the capacity to engage with the project, and so their lived experiences and stories did not get told.

5. Conclusion

5.1. Recommendations for Future Research

Owing to the gaps in previous research and the limited scope of this project, the first step in improving the lives of double‐duty caregivers is to conduct more research. Double‐duty caregivers are an understudied group of people, and there is a lot that is not yet known about their lived experiences. Expanding the scope of this current research project will allow for future research that can uncover more of the realities of women and people who are double‐duty caregiving. Very little is known about gender diverse caregivers, as research into gendered caregiving roles has up to this point focused exclusively on traditional gender roles [37]. Future research into caregiver health could address this by investigating how gender diverse people engage with care and caregiving within socio‐cultural gendered care roles. Because women and people who are double‐duty caregivers are a group that typically experience inequities and a lack of voice [34], future research could focus on empowerment and participatory processes that encourage women and people to co‐own the research and its findings. This research will need to be culturally safe and competent, so that Māori, Pasifika and ethnic minority participants can engage safely and in a way that honours their cultures and stories.

5.2. Conclusion

The findings from this study point to the gendered reality of caring and indicate that, within New Zealand, women may feel pressure and socio‐cultural expectations to inhabit caregiving roles, both formally and informally. The consequences of these caring roles for women are significant; double‐duty caregiving in this research has been linked to stress and exhaustion due to role conflicts and stressors specific to caregiving. Women who are double‐duty caregivers in this study also reported neglecting their own health as a way to deal with all the demands placed on them. Social determinants of health were seen to play a significant role in participants' health and wellbeing, particularly for BIPOC women whose health was impacted by marginalisation and/or oppression as a result of living within the dominant Western culture [22]. These results were also relevant for Māori health and wellbeing, as Māori participants reported heavy burdens of care and fewer resources to manage them, as well as encounters with culturally unsafe services. It is clear that double‐duty caregivers' lives can be affected not only just by their identities but also by wider societal forces including colonisation and unequal power structures that privilege certain people, as well as social determinants of health [35].

The double‐duty caregivers in this research highlighted how their health and wellbeing were adversely impacted by their caregiving roles. However, this research suggests several important ways that double‐duty caregivers could be valued and supported for the vital work that they do, which could support their health and wellbeing. Workplace reforms that promote caregiver health and safety are recommended, as well as government support services that provide culturally safe support for caregivers in their informal care roles. Owing to the gaps in previous research and the limited scope of this project, the first step in improving the lives of double‐duty caregivers is to conduct more research. This will need to be done in a culturally safe and participatory way to avoid further disempowering this group of women and people who often lack a voice [34]. Socio‐cultural expectations of care also appear to be putting pressure on specific women to inhabit caring roles, drawing attention to intersectional issues of social justice [9]. People who provide care deserve full support, as they play a vital role in our society. Sophie demonstrated this when she explained, ‘I feel really good when you can help someone and put a smile on their face. And you know you've made a difference to their day.’

Ethics Statement

This research project was approved by Victoria University of Wellington's Human Ethics Committee (Approval Reference Number 30276).

Conflicts of Interest

The author declares no conflicts of interest.

Appendix A. Interview Question Guide

(Used as prompts as needed, not necessarily word‐for‐word)

1. What interested you in taking part in this research?

2. What is life like for you being a caregiver in two different places in your life? Tell us about your different caregiver roles, and the impact they have on your life.

3. How did it come about that you took up these roles? How do you feel about these roles?

4. Are there other people you share your unpaid caring roles with? How do you feel about the amount of care you provide?

5. In what ways (if at all) is caring important to you, and what resources do you need to provide care?

6. In what ways (if at all) do you feel supported in your dual caregiving roles? What could change in your life for you to feel more supported?

7. What things do you do in your life that support your own health and wellbeing? How easy/difficult do you find it to make time or access the resources you need to do these things?

8. What ways, if at all, do your caregiving roles impact on your health and wellbeing?

9. What resources do you need in order to support your health and wellbeing?

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.