Exploring the daily geographies of diverse men caregiving for family members with multiple chronic conditions

Abstract

Within Canada, it has been estimated that almost half of all family, also known as informal, caregivers are now men. However, the contributions and experiences of these caregiver men have received relatively little attention, particularly from geographies of care and caregiving researchers. This analysis hopes to shed light on the unique, yet diverse, experiences of men caregiving for persons with multiple chronic conditions in Canada. Drawing on semi-structured interviews with nineteen men caregivers in two provinces of Canada, this analysis aims to explore how social and physical axes of difference shape men’s daily lived geographies when providing care. Our thematic findings reveal that caregiving is experienced by participants at the three scalar levels of the body, the home and the community. Our intersectional analysis reveals that at each scalar level, being a man was not the only variable shaping caregiving experiences. Rather, it was also age, physical capacity, culture, socio-economic status, marital status, housing status, social connectedness, relationship to the care recipient and care recipients’ physical and mental capacity that shaped experiences and meanings of place during the caregiving process. Accounting for this diversity at each scale, our findings point to the unique stresses and challenges experienced. We conclude by emphasizing the significance in acknowledging the diverse challenges that exist for all caregivers in order to inform comprehensive and inclusive social policy that ultimately will produce equitable caregiver supports.

Resumen

Dentro de Canadá, se ha estimado que casi la mitad de todos los que cuidan a algún miembro de la familia, conocidos también como cuidadores informales, son actualmente hombres. Sin embargo, las contribuciones y experiencias de estos cuidadores han recibido poca atención, particularmente de lxs investigadorxs de las geografías del cuidado y la salud. Este análisis apunta a echar luz sobre las experiencias únicas, aunque diversas, de los hombres que cuidan a personas con múltiples enfermedades crónicas en Canadá. Basándose en entrevistas semiestructuradas con diecinueve hombres que brindan cuidado en dos provincias de Canadá, este análisis apunta a explorar cómo los ejes social y físico de la diferencia dan forma a las geografías de las vidas cotidianas de los hombres cuando brindan cuidado. Nuestros resultados temáticos revelan que el cuidar a alguien se vive por los participantes a los tres niveles escalares del cuerpo, el hogar y la comunidad. Nuestro análisis interseccional revela que en cada nivel escalar, el ser hombre no era la única variable que daba forma a las experiencias de brindar cuidado. En cambio, eran también la edad, la capacidad física, la cultura, el estatus socieconómico, el estado civil, la situación habitacional, la conectividad social, la relación con el receptor del cuidado y la capacidad física y mental del/a receptor/a del cuidado, los que daba forma a las experiencias y significados de lugar durante el proceso del cuidado. Teniendo en cuenta esta diversidad en cada escala, nuestros resultados apuntan a las tensiones y desafíos únicos que viven estos hombres. Concluimos enfatizando la significancia de reconocer los diversos desafíos que existen para todxs lxs cuidadorxs con el objetivo de orientar una política social abarcativa e inclusiva que, en última instancia, produzca apoyos equitativos para lxs cuidadorxs.

摘要

在今日的加拿大，据估计有半数以上家庭的非正式照护者是男性。但这些男性照护者的贡献和经验，相对而言却鲜少获得关注，特别是来自照护地理学与照护研究者的关注。本分析期盼阐述加拿大此一特殊但却多样化的男性照护患有多重慢性病症者的经验。本研究运用加拿大两个省分中的十九位男性照护者所进行的半结构式访谈，旨在探讨社会与物理的差异轴线，如何形塑男性提供照护时的每日生活地理。我们的主题发现，揭露了提供照护者在身体、家户以及社群三个层次上经历了照护供给。我们的相互交织性分析，揭露了在每个层次上，身为男性并非是形塑照护经验的唯一因素。反之，年龄、体能、文化、社会经济地位、婚姻状态、家户情形、社会连结、与接受照护者的关係，以及接受照护者的体能和心智能力，皆在照护过程中形塑了地方的经验和意义。我们的研究发现透过在各个层次阐明此般多样性，指出照护者经历的特殊压力及挑战。我们于结论中，强调承认对所有的照护者而言存在的多样挑战之重要性，以告知最终生产公平的照护者支援的综合性与包容性的社会政策。

Keywords:

• Men
• caregiving
• diversity
• geographies of care
• intersectionality
• multiple chronic conditions

Palabras claves:

• Hombres
• cuidado
• diversidad
• geografías del cuidado
• interseccionalidad
• enfermedades crónicas múltiples

关键词:

• 男性
• 照护工作
• 多样性
• 照护地理
• 相互交织性
• 多重慢性病症

Introduction

Within Canada, it has been estimated that at some point in their lives, nearly half of all Canadians will be called upon to provide care, in various forms and degrees of intensity, to a family member or friend with a long-term health condition, disability or ageing need (Statistics Canada 2014). Despite this statistic, when asked to imagine one of these family caregivers, many of us will inevitably visualize a woman. Although this is a true depiction of an average family caregiver in Canada, it has been estimated that almost half of caregivers (46%) are now men and this proportion is only expected to rise (Statistics Canada 2014). Shifting demographics, such as smaller family sizes, families that are increasingly dispersed and diverse, increased rates of Alzheimer’s disease (which disproportionally affects women) and both men and women having full-time employment are some of the reasons attributed to why more men are assuming family caregiving roles (McNabb 2015; Scott 2015). However, the contributions and experiences of these men have received relatively little attention, particularly from geographies of care and caregiving researchers (Kramer 2002; Milligan and Morbey 2013).

The analysis presented herein casts a spotlight on the unique, yet diverse, experiences of this growing group of men caregivers in Canada. Drawing on semi-structured interviews with men caregivers (n = 19) and using an intersectionality approach (Hankivsky 2012; Valentine 2007), this analysis aims to critically explore how social and physical axes of difference shape men’s daily lived geographies when providing care for an older adult (65 years and older) with multiple chronic conditions (MCC). We begin by introducing critical geographies of care and caregiving men and then present our study overview and thematic and intersectional findings. We conclude by emphasizing the significance of considering diversity among men and acknowledging the challenges that exist for all caregivers in order to inform comprehensive and inclusive social policy that ultimately will produce equitable caregiver supports.

Critical perspectives on the geography of care

In recent years, the term ‘care’ has become increasingly complex, being understood today as a concept that is fluid, temporal, dynamic and occurring across multiple scales (Milligan and Power 2010). Here, we define care broadly as being both the physical and emotional labour that is performed on behalf of another/others (Bowlby 2012; Conradson 2003). For geography of care and caregiving researchers, the ‘places’ in which such care occurs are central focus. Although sites of care, such as the home or hospital, are major areas of research, the multiple ways in which care is shaped have also been explored. For example, it has been emphasized how relations of power filter their way through and manifest in different ways at each scalar level during the caregiving process (Dyck 2005; Wiles 2003). As Dyck (2005) explains, ‘[t]he everyday activities of care work are not simply a local matter’ but are ‘effects of the stretching of social, political and economic relations over space, constructed and negotiated at interlocking scales of bodies, homes, cities, regions, nations and the global’ (235). Wiles (2003) echoes this, suggesting that care and caregiving are dynamic, temporal processes that stretch across these scales, and from which various social and environmental factors enter in to alter the caregiving experience, for example access to caregiver supports. Notions such as ‘landscapes of care’ (Milligan and Wiles 2010) and ‘carescapes’ (Bowlby 2012) have been introduced by geography of care researchers to unveil the various ways in which proximate and distant scales of care intersect and relate to one another across time.

Who provides care in our society is directed by deeply embedded socially- and politically-defined sets of expectations and practices regarding rights and responsibilities (Dyck 2005; Milligan and Power 2010). The common declaration that ‘caregiving work is women’s work’ highlights these expectations and emphasizes the material and ideological underpinnings that differentiates labour by a gendered boundary shaping what women do, what we say they do and what we think they should do (Armstrong, Armstrong, and Scott-Dixon 2008). Feminist scholars have been highly critical of the various structures that forge women into such caregiving roles, as well as their assumed ‘natural’ association with the highly feminized space of the home (Armstrong, Armstrong, and Scott-Dixon 2008; Bondi 2008). This boundary, however, is not simply about gender difference, but also about power and assigned worth. In general, to call something ‘women’s work’ means it is less valuable in terms of both prestige and pay (Armstrong, Armstrong, and Scott-Dixon 2008). Undoubtedly, feminist scholars have contributed greatly to the geographies of caregiving research and our understanding regarding how caregiving work is given to women. What has received less attention, however, is how at the same time caregiving work is taken away from men, whereby not caring is viewed as a defining characteristic of manhood (Bondi 2008; Graham 1983).

Although rooted in feminism, current critical caregiving research is beginning to move laterally to explore various intersections of people, place and participation (Kearns and Collins 2010). Such relational perspectives disrupt the common conception that care and caregiving is simply a women’s issue and emphasizes that care takes place within a complex web of relations (Dolan and Thien 2008). There are now increasing calls for more healthcare geography researchers to recognize the diversity that exists within categories of difference, for example sex, gender, class, culture, socio-economic status, among others. Considering that care is understood, experienced, felt and acted out differently by different people in different places (Milligan and Power 2010), applying an intersectional lens to caregiving research holds the potential to produce valuable knowledge. A more nuanced understanding on the diversity of experiences of caregiving in the multitude of places in which it occurs can be used to inform policymakers on how best to address inequities in access to supports.

Family caregiving … like a man

In Canada, there are an estimated 8 million family caregivers, most of whom are untrained and unpaid, caring for chronically ill, ageing or dying family members or friends (Statistics Canada 2014). This care can take place in a variety of settings, but due to current neoliberal trends, it is increasingly taking place in community settings, especially the home (Carstairs 2005). Although caregiving can be a rewarding experience, it is often demanding work with the commonly referred to ‘caregiver burdens’ frequently producing high levels of physical, mental and emotional stress (Bialon and Coke 2012). Although little research exists on this issue, caring for one with MCC, a rapidly increasing demographic in Canada (Canadian Institute for Health Information 2011), is likely to exacerbate caregiver burden due to the care recipients’ healthcare complexity, high risk for adverse effects and events and high use of healthcare services (Canadian Institute for Health Information 2011; Gilmour and Park 2006). Unfortunately, necessary support and/or resources are often not available for these caregivers, which results in pushing some beyond their capacity to cope (Stajduhar and Davies 2005).

Despite the number of studies conducted on caregiving over the past decades, the experiences of men have been often overlooked (Kramer 2002; McNabb 2015; Milligan and Morbey 2013; Scott 2015). Some researchers have contributed to addressing this knowledge gap through gender-sensitive research on caregiving and finding men to have unique caregiving experiences, challenges and support needs compared to women (Chapman 2004; Chappell, Dujela, and Smith 2015; Montgomery and Datwyler 1990; Morris 2001). For example, it has been suggested that men are less socially prepared for caregiving roles and less likely to have background experience in the basic activities of daily care, which leads to increased stress levels (Scott 2015). It is also suggested that men are likely to use different strategies than women when dealing with problems that arise during caregiving, such as focusing on single tasks, blocking emotions and minimizing distractions (Lin, Fee, and Wu 2012; Milligan and Morbey 2013). Gendered differences in the types of care provided also exist: Women are more likely to provide personal care, while men provide more house maintenance and outdoor work (Statistics Canada 2014). Some researchers have also begun to explore gendered experiences of men without comparing them to their gendered counterparts (e.g. Barker 2014; Doucet 2006; Fromme et al. 2005; Kramer 2002; Milligan and Morbey 2013; Ribeiro, Paúl, and Nogueira 2007). However, little of this research is from the perspective of geography of caregiving researchers (Milligan and Morbey 2013) and often diversity among the men is either not considered or is analytically predetermined (e.g. age). Thus, this analysis aims to geographically explore the diverse experiences of men providing care for a family member or friend with MCC using an intersectionality lens. The purpose is to not only address calls for more geographic research to acknowledge the contributions and experiences of men caregivers and caregivers of those with MCC, but ultimately to contribute knowledge that can move policy towards enhancing supports that meet all caregivers’ needs.

Study overview

This analysis is based upon a subset of data collected for a repeated-measures embedded mixed-method study that examines the combined influence of intersecting social/demographic positions on family members’ experiences of caring for older adults with MCC. The data were collected in the two provincial jurisdictions of Ontario and Alberta in Canada. A multipronged snowball recruitment strategy was employed, which involved the circulation of invitations to participate through various networks and local organizations (e.g. homecare, local health, etc.). Participants were required to be primary family caregivers, meaning they were primarily responsible for providing physical, medical, psychosocial and/or personnel care to the recipient with MCC. Participants were also required to be: (1) family caregivers of an older adult (aged 65 years and older) with MCC; (2) providing care for a recipient who had three or more chronic conditions within the 6 months prior to participating in the research; (3) aged 18 years or older; and (4) English speaking. Ethics approval was obtained from the Research Ethics Boards at both McMaster University and the University of Alberta.

Data collection

The larger repeated-measures mixed-method study involved conducting surveys over the phone and in person with participants (n = 194) at two points in time (6 months apart). This analysis is based upon data collected during a third qualitative semi-structured interview conducted with a subsample of the larger participant group (n = 40) and who were purposively selected to represent their social and demographic diversity. The intent of the semi-structured interview was to garner a deeper understanding of how the experience of caregiving was impacted by multiple axes of diversity (i.e. gender, culture, age, etc.), and also to probe the dynamic nature of caregiving for older adults with MCC. The interviews averaged 1 h in length and all 40 were audio-taped, transcribed verbatim and imported into NVivo™ software for analysis. For the current analysis, only semi-structured interview transcripts from participants identifying as a man were used (n = 19). Ten were providing care for their wife/life partners, while nine were caring for parents. Most identified as Caucasian (n = 17), with one identifying as South Asian, and one as East Indian. Most were married (n = 12), while three were divorced/separated, and four were single. The men’s ages ranged from 46–50 to the 86–90 years age groups. One participant did not complete high school, four had high school diplomas and most (n = 14) had a university or college degree. The participants were mostly unemployed or retired (n = 14) with annual incomes ranging from less than $10,000CND to $70,000CND or more.

Analysis

The analysis was conducted in two steps. Step one began with the lead author reviewing five randomly selected transcripts. It became apparent from these transcripts that the men’s daily lives and routines were spatially impacted by their roles as caregivers. Once all authors agreed that these spatial impacts were evident in the data, a thematic analysis, using a scalar framework, ensued on the entire men data subset. Existing geographies of care literature were drawn upon to facilitate the definition and identification of potential scalar categories (e.g. Giesbrecht, Crooks, and Williams 2010; Wiles 2003). Specifically, scale is defined here not to be a fixed, material or a given category, but something socially constructed and fluid (Martson, Jones, and Woodward 2005; Moore 2008). Data were then thematically coded based on the spatial scales that emerged. Thematic analysis involves both inductively and deductively reviewing and coding data in order to explore existing research goals as well as any issues which are emergent, and sometimes unanticipated, from the data-set via the identification of patterns that become categories for analysis (Fereday and Muir-Cochrane 2006).

Step two involved applying an intersectionality lens to each of the scalar thematic findings. Consistent with intersectionality studies, there were no pre-determined variables selected for the analysis, but rather attention was paid to examining how the men’s social and physical locations (e.g. age, education, gender, etc.) simultaneously intersected to shape their caregiving experiences at each scalar level. Concerned with social justice and equity, intersectionality claims that social locations are inseparable and shaped by interacting and mutually constituting social processes and structures, which, in turn, are shaped by power and influenced by both time and place (Hankivsky 2012; Valentine 2007). Development of the intersectionality coding scheme involved an iterative process, whereby the data coded into each scalar category were reviewed in-depth, thematically analysed and coded independently. To enhance consistency, the first author led all steps of the coding and analytic process. Investigator triangulation was performed throughout the analysis to ensure consensus was reached on emergent themes. Therefore, multiple investigators were involved in each step to provide feedback and enhance interpretations, thus contributing to the reliability of the findings.

Findings

Emerging from the first thematic analytic step was that participant’s daily geographies occupied three scalar levels: (1) the body, (2) the home and (3) the community. Although we organize our findings according to these three themes in the following subsections, it is important to acknowledge that these scalar levels are fluid, interconnected and inter-related with regard to the social and physical aspects of caregiving. For example, the activities and meanings around the body influence what happens at the household, and also movement and activities beyond the household into the community. Emerging from the second intersectional analytic step was the finding that within each scalar theme, participants’ social and physical locations shaped their caregiving experiences. Particularly, in addition to the masculine experience of caregiving work, the men’s age, physical capacity, culture, socio-economic status, marital status, housing status, social connectedness, relationship to the care recipient and care recipients’ physical and mental capacity shaped experiences and meanings of place during the participants’ caregiving process. To ensure anonymity, all participants have been assigned pseudonyms.

The body

Caregiving experiences at the scale of the body are the most prevalent and detailed in the transcripts. Participants commonly shared how the quantity and nature of caregiving work in relation to the body has a dramatic impact on the daily life of the caregiver, their household and capacity to move beyond the home. This care included a range of necessary tasks (feeding, bathing, toileting and administering medications), which took place on a daily basis, if not more.

Findings indicate that positive and negative experiences involved with bodily care were highly dependent upon the caregiver’s relationship to the recipient. Sons caring for parents with MCC were found to experience significant stress. This was largely due to power dynamics that exist between parents and their children, but may perhaps also be complicated by embodiments of gender and associated expectations and assumptions with having a son take on what is traditionally a daughter’s role. Paul explains his challenge negotiating this power dynamic: ‘I don’t know if this is normal, but in a mother/son relationship, often you are always the child, you know? You can’t break that … It seems you’re not treated as an adult’. Age and physical ability were also found to intersect with being a son caregiver in relation to the types of physically demanding caregiving tasks they are often expected to perform and the wear such work can cause to their own bodies. For example, Adam, from 61 to 65-year age groups, explains:

I gotta watch what I do because I got my own physical problems and I don’t think my dad realizes how … much it bothers me to lift him and help him into the car … I never say anything to him … it’s bothering me just because I’m getting older …

Here, Adam describes the physical distress he experienced, but how he still refused to tell his father or seek help for some of the more demanding tasks.

Culture was also found to intersect with being a son caregiver, further complicating relationships and the experience of caregiving. Amit, who is South Asian and caring for his mother, describes that:

It was difficult for me when she could not manage to … change her dresses … I used to feel … very sad because … culturally it was a no-no for a son in our culture to do that for a mother …

Amit went on to express the additional challenges and emotional stress he experienced with regard to toileting and how, because he was a man of South Asian culture, his mother simply did not allow him to help her in that way:

Culturally, that [toileting] was the biggest challenge and I just didn’t know what to do or how to handle it sometimes. It was very difficult … How do I tell her … ‘it’s okay mom’ … And she didn’t want to, … she didn’t want anything to do with it and she’ll tell me, ‘No, you don’t do that part’ … [getting emotional] … And I think … She felt more sorry for me …

Amit resolved such situations by calling upon his sister, who lives nearby, to provide his mother with such highly intimate care. For Amit, gender, culture and relationship to the care recipient intersect to result in a very stressful experience. Aditya, also from South Asia, was caring for both parents and made similar remarks in relation to being a son and providing physical care, such as massages, to his mother. During the interview, Aditya expressed how massages were beneficial to his mother’s well-being; however, she did not allow him to touch her in that way. Thus, they faced an extra financial burden of having to pay out of pocket for massage therapy.

In contrast, it was found that being a husband or life partner to the care recipient alleviated much of the awkwardness of intimate care. Although issues such as toileting and administering medications were still found to be stressful tasks, the intimate context of their relationships make some things, such as bathing and dressing, less of an issue. David explains:

So I’m there when she’s in there having a shower, just to keep an eye on things and then I dry her back and dry her, pretty much I do her hair, do the hairdryer and that ‘cause she can’t get her arms up over her head, so I do a lot of that in the day.’

Regardless of caregiving relationships, stress was often associated with the complex nature of caring for someone with MCC. John commented on the experience of constantly monitoring his wife’s bodily changes and evolving health status:

[Wife] does have some other conditions … that, I find, is very demanding from the point of view you’re never sure what is the cause and effect, you know? … And so you have to figure out … is that from the dementia or does she actually have another different problem? And that’s what the constant battle is and … the whole problem solving bit comes in all the time.

This need for continuous ‘problem solving’ due to the care recipient’s MCC was commonly mentioned in the transcripts, and for some, proved to be quite challenging as there was often not a simple solution. Thomas explains:

I work in IT and work with computers. There’s always a fix, right? … There’s a problem, you know what to do, you fix it, everything’s running smooth again and … you have that instant gratification … it’s solved, right? You don’t get solutions with your parents.

This finding alludes to how some participants were able to remove themselves from their role and approach caregiving more as a job, rather than a way of life, reflecting a gendered, more traditionally masculine, approach that includes the desire to ‘solve problems’ and ‘fix’ them. Here, the participants implicitly express the challenge of not being able to control the situation and/or take a rational approach to understanding ‘cause and effect’ in relation to the complexity of their role.

The home

Although many participants had positive experiences and embraced their roles as caregivers and the traditionally feminine domestic tasks they conducted on a daily basis, it often involved a lot of learning. Richard explained, ‘This [caregiving] changed my whole life and all of a sudden now, I have to learn to do a number of things: Wash clothes, cook, grocery shop, and grocery shop was probably the hardest’. Older participants who were married or with women life partners acknowledged how they had previously underestimated the amount of work and skill homemaking entailed, as Christopher, from 81 to 85-year age groups stated, ‘I think it’s helped me understand many of the things that [wife] did for years for the family and for me and I guess I was taking all that for granted’. In a sense, these participants, like Richard from 81 to 85-year age groups, are attributing more value to domestic work:

It causes you to realize, first of all, that your wife was a lot smarter than you thought because you see all the things that she did. You see … the washing and the cleaning and the sorting … all the things. And the cooking … and you see a reason for her to have all those recipe books that you never looked at.

Other participants, however, reinforced a traditional masculine identity by drawing a gendered boundary between the interior or ‘home’ (i.e. feminine work space) and exterior (i.e. masculine work space) of the ‘house’. Intersecting with housing status and housing type, many participants expressed the stresses of house maintenance while caregiving, for example Adam:

I’d go, ‘Oh geez I gotta go cut the lawn again,’ but I’ll do it, you know? You just go and do it. Or I gotta drop down and I gotta drain all the water lines, get things ready for winter, get up on the ladder, get the eavestroughs cleaned out …

Intersecting with age and physical capacity, Duncan from 80 to 85-year age groups, explained how the work in maintaining a house, on top of caregiving, can become more than he is able to manage as he continues to grow older:

One of the things you keep thinking about now is, can you handle everything that goes with the house? You’ve got the snow shovelling in the winter and you’ve got grass … all the windows need washing here … It’s harder.

For participants who have access to material resources, the physical space of some homes underwent renovations or alterations. Often, such renovations/alterations were connected to the health status and mobility of the care recipient. Aaron explained his plan to move the dining room furniture to the basement so that the kitchen, bathroom and bedroom could all be on the same floor, eliminating the need to negotiate stairs. John, making over $70,000 CND annually in income, described how his daily geography had become confined to the home as a result of his wife’s mobility issues. He stated that their ‘traveling days are done and vacations are done and the whole world has shrunk … the world has shrunk’. As a result of not being able to ‘travel to the outside world anymore’, he invested in a home theatre system in order to ‘bring the world’ to them.

The issue of privacy within the home was raised by multiple participants, particularly out of the desire to maintain boundaries that protect their private space. Caregiver relationship and whose home the caregiver resides in dramatically shaped this experience. Paul, a son living in his mother’s home, felt that this was one of his biggest challenges, ‘just having my space respected or creating space that is mine within … the home situation here’. He felt a great ‘loss of independence’ and went on to explain that:

… you don’t have your privacy in the same way … And everything is … monitored … Who comes in the house, who doesn’t … I don’t feel … free in doing what I would normally do.

Access to formal home care services was found to depend largely on participants’ location of residence and access to finances. Although the majority of participants reside in urban settings, Jeremy, a rural participant, stated that due to living ‘out in the country’, he did not know whether or not such services existed for him. Jeremy went on to state that he was not able to afford private care support. He claimed this financial struggle was due to out-of-pocket costs he endures for medications and equipment, such as a wheelchair and/or walker. Most participants, however, accessed some form of publicly funded homecare support, such as homecare workers, who often assisted with bathing, dressing and toileting.

The community

Participants’ geographies extended into the community; however, for some, these public spaces resulted in social tensions due to their gender and relationship to the care recipient. For example, Luka, a son caregiving for his mother stated, ‘You know, I feel uncomfortable in a store or something, pulling up her skirt if it slides down a little bit from just the walking around’. In the public sphere, discomfort was expressed in performing such acts of care due to its intimacy and the gendered context of being a man caregiving for his mother. Aditya, who was caregiving for his mother, shared his thoughts and frustration that perhaps due to his South Asian culture, he faces additional stigma from his community:

I feel a bit sensitive to the fact that … I’m a male doing it, right? … And I’ve had a few friends say, ‘[Participants name], it’s unusual for a man to be living at home with your mom,’ …. And so I’m a bit sensitive about that.’

Some participants commented on how social interactions changed due to the health status of the care recipient. For example, those caring for someone with cognitive impairment tended to feel greater social tension in the community. As Frances, a participant caring for his wife living with Alzheimer’s disease, states ‘[p]eople don’t know what to say or what to do and it’s not uncommon for people to back off and they’re very uncomfortable’. Francis goes on to share how he made the effort to remain engaged in his community and take his wife to a monthly church dinner, but it did not work out as he had hoped:

I was told I shouldn’t do it because it makes people feel uncomfortable … I felt rather isolated. I mean you could feel the tension, you know? If you’re sitting in the dining room when you first arrive, nobody comes and sits with you and if you arrive later, no one invites you to sit down.

Despite his efforts, it was the unease of those in the community and underlying social stigma surrounding cognitive impairments that resulted in participants’ minimizing their interaction with the community, thus decreasing the scale of their world, and resulting in feelings of loneliness and isolation.

In contrast, some caregivers of those with no cognitive impairments had very different experiences and took great pleasure in going out in public. David, a husband caregiver, describes:

I enjoy when I can get her dressed and we go out socially and people say, ‘Gee, you [care recipient] look lovely,’ you know? Well, now it’s all because I’ve done her hair … [Laughter] … Yeah, I’ve done, you know, I’ve picked out her clothes and stuff like that, so that makes me feel good, and she feels good, so that’s what I like about it.

For David, the positive acknowledgement he received regarding the care he provides resulted in feelings of pride and offered encouragement for his caregiving work. Christopher explained how he enjoys getting out with his wife to ‘see what’s going on’. He explained how it is a positive experience for both of them to go visit a local coffee shop, where they: ‘sit at one of the windows and watch the traffic go by and people chatting, you know … people watching [Laughter] … we get some exercise and fresh air and a little stimulation’.

In most cases, it was the physical capacity of the care recipients that determined their mobility beyond the home. For some, having to adapt their mobility to that of the care recipient took patience, like David who stated: ‘I gotta learn to slow down even when we’re walking … These are the changes you have to adapt to, at least as a caregiver … you’ve got to slow down with them, and I don’t really enjoy that’. For husbands, this restriction in mobility was found to be particularly challenging, as what used to be commonly shared activities are no longer enjoyed. Walter shared that:

The things I don’t like about it [caregiving] is that the things that we used to do together, we can’t do … And that’s things like travel and concerts and just walking, is one of our great pleasures. We can’t do that anymore.

Expressions of confined geographies are commonly shared throughout the transcripts, for example, statements like James who said ‘I haven’t got as much rope [freedom] as I used to have’. Feeling anchored down was a source of disappointment and frustration for many participants. Matthew, a son caregiving for his mother, shared how he has remained geographically fixed and put his life on hold in order to provide her care:

I started to feel that, for the time being, I’m stuck in place … Like I sort of have indicated that I’m just kind of in a period of limbo where I don’t feel I can really move or travel or do anything.

Caregivers with the necessary financial resources, knowledge of and access to available community supports use these to their advantage in order to acquire moments of respite. Such respite support allowed the participants to get out into the community for limited periods of time. However, it is important to acknowledge that not all participants had equal access to such supports and some struggled caring for their loved ones with little to no community support and/or respite. For example, Amit expressed the barriers he faces in accessing supports that are culturally available and relevant to him:

We don’t have that kind of thing [caregiver support] in the community. When I say community, I’m referring to our own community [Ismali], I’m not referring to the larger community … In our own community, all these things were limited.

In this example, it was the lack of culturally relevant supports available, and a reluctance to reach out for other non-culturally specific local support services, that resulted in Amit bearing the burden of care for both of his parents on his own.

All participants described their need to venture into the community for various medical appointments. Some described these trips as being incredibly challenging due to the restricted physical mobility of the care recipient or barriers accessing transportation. Additionally, the number of visits and medical professionals being seen were numerous due the MCC of the care recipients. As Francis explained, ‘you have to watch everything … she takes lab tests and everything on a regular basis. That is becoming more difficult all the time.’ James commented that as there is no geriatrician in their area, they must venture out to see three different specialists regularly for her Alzheimer’s, thyroid and diabetes.

Discussion and conclusion

Our findings unveil the gendered experiences of men who have become strongly invested in one of the most femininely defined areas of social life that often occurs within the feminized space of the home (Doucet 2006; Milligan and Morbey 2013; Tarrant 2013). For some participants, it was found that great tensions existed between hegemonic masculinity [the most honoured way of being a man, which traditionally embodies qualities such as strength, stoicism, reliability and control (Connell and Messerschmidt 2005)] and the traditionally feminized role of family caregiving. These found tensions relate to Nancy Fraser’s proposed Universal Caregiver model, which suggests that if men are to become more encouraged to participate in caregiving, we must deconstruct and dismantle the gendered opposition that exists between traditional masculine (breadwinner) and feminine (caregiver) roles (Fraser 2013).

Despite these tensions, it was found that the caregiving role simultaneously allowed participants the opportunity to contest hegemonic masculinity. Such findings reflect the men’s agency and capability to negotiate their roles, which for some involved attributing significance and inherent value to their caregiving and domestic labour. At the scale of the body, many men reinvented notions of normative masculinity as they performed intimate daily care tasks such as toileting, feeding, bathing, dressing and styling hair. At the scale of the home, this was done via the performance of domestic tasks, such as cooking, cleaning and doing laundry. Here, the meanings and framings of the homespace shifted for the men as a result of their domestic responsibilities (Milligan and Morbey 2013). These findings support Doucet’s (2006), Ribeiro and colleagues’ (2007), and Tarrant’s (2013) contentions that men who provide care are actively recreating new versions of masculinity that encompass both elements of the masculine and feminine. Offering a unique contribution by moving beyond the home to the community, our findings expose how confronting hegemonic masculinity within the private space of the home may differ from in public. Greater tensions existed in the community; however, a few men actively disrupted hegemonic masculinity via their public assumptions of their caregiving roles and their demonstrated pride in their work. Complexly, however, this may also be associated with the fact that men who are caregivers are still seen as a novelty in our society (Lin, Fee, and Wu 2012). As such, there are lower pressures and social expectations on men who provide care than women, resulting in greater social recognition and applause for them when they do (Lin, Fee, and Wu 2012; Scott 2015).

Despite common gendered experiences, our findings emphasize that it is not simply being a man that shapes caregiving experiences. Such findings build upon Tarrant’s (2013) exploration of grandfather’s experiences, whereby age was found to intersect with gender to define experiences of caregiving and also Milligan and Morbey (2013) exploration of older men caregivers, whereby age and previous life/work experience intersected with gender to influence the type of supports needed. However, by framing participants’ experiences in a scalar way, a spatial view on how complex relationships between structural and social factors shape individual experiences and understandings are able to emerge (Masuda and Crooks 2007). The daily geographies of participants’ lives were found largely to be restricted to the body, home and local community. Such findings reflect an ‘experiential approach’ to scale that encourages movement away from ‘rigid hierarchies toward a use of scale as a representation of micro to macro level phenomena that are salient to people’s everyday lives’ (Masuda and Crooks 2007, p. 257) Although some diverse social locations (e.g. relationship to care recipient, culture) were found to shape caregiving experiences at each of the three scalar levels, many differences emerged demonstrating that various axes of diversity are experienced in different ways at differing scales. Thus, our findings contribute a nuanced understanding on men’s diversity to the broader geography of care literature by illuminating how one’s position within the complex web of diversity will manifest into differing challenges and benefits at various scales. More specifically, our findings suggest that experiences of diversity in the caregiving context are spatially defined, whereby one’s situated social and physical positioning will result not only in differing experiences from others, but also in differing experiences and impacts at the scale of the body, home and community.

There are some limitations of this study. To begin, due to diverse definitions of ‘caregiving’, only those who self-identified as a caregiver would have responded to invitations to participate in this study. Furthermore, the participants of the qualitative interviews were taken from a larger quantitative study, which means that additional (and more diverse) participants were not able to be sought to further inform the findings. As such, there exist many avenues for future intersectional research to explore in greater depth the simultaneous axes of diversity examined here and beyond, for example geographic (e.g. urban/rural/remote), sexual orientation, culture, ethnicity, race, religious orientation and educational levels.

Ultimately, by recognizing the unique scenario of each caregiver–care recipient dyad, this analysis has brought us a step closer to better understanding who needs what kinds of supports. For example, our findings suggest that sons from South-East Asian cultures may be at greater risk of stress/burden due to bodily related cultural taboos that older caregiving men with dwindling physical capacity who are also physically responsible for maintaining a house and property may face greater risks of physically related stress/burdens and that caregivers lacking social connectedness or caring for one with cognitive impairment or severe physical mobility issues may face greater risk of stress/burden due to factors related to isolation. Such information may help inform decision-makers’ and service providers’ work to better support family caregivers. It is through recognition of these diverse experiences, and identification of specific needs for support and capacities for resilience, that comprehensive and inclusive social policy can be informed in order to enhance access to equitable caregiver supports for all caregivers (Kramer 2002; Milligan and Morbey 2013).

Funding

This work was supported by the Canadian Institutes of Health Research Signature Initiative in Community-Based Primary Healthcare [grant number TTF 128261]; the Ontario Ministry of Health and Long-Term Care [grant number 06669].

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Melissa Giesbrecht is a health geographer and interested in critically exploring diverse experiences within the spatial and place-based dimensions of health and health care. She completed her PhD at Simon Fraser University in 2013. Since then, she has worked as a Research Associate at the Department of Geography, Simon Fraser University and is also currently a postdoctoral fellow at the Institute on Aging and Lifelong Health, University of Victoria.

Allison Williams is trained as a social/health geographer and holds a position as Professor in the School of Geography and Earth Sciences at McMaster University. She currently holds a Canadian Institutes of Health Research (CIHR) Chair in Gender, Work and Health (2014–2019), allowing her to pursue a research programme that will inform our understanding of caregiver-employees (CEs). Dr. Williams’ experience working in the policy-making domain positions her to advocate for policy and practice improvements at the national, provincial and local levels, while informing international policy.

Wendy Duggleby is a professor, endowed nursing research chair in Aging and Quality of Life and Director of the Innovations in Seniors’ Care Research Unit in the Faculty of Nursing at the University of Alberta. She is also an adjunct professor, Division of Palliative Care, Department of Oncology, Faculty of Medicine and Dentistry University of Alberta and advanced oncology certified nurse (AOCN). Wendy and her research teams have developed and evaluated several interventions to foster hope and quality of life in older adults and their family caregivers with national and provincial funding support. This research has received multiple awards for excellence, including the Queen Elizabeth II Jubilee medal for the impact of this research on the health of Canadians.

Jenny Ploeg is a professor in the School of Nursing, Faculty of Health Sciences and an associate member in the Department of Health, Aging and Society, McMaster University. She is the co-director of the Aging, Community and Health Research Unit, focused on promoting optimal aging of older adults with multiple chronic conditions and supporting their family caregivers.

Maureen Markle-Reid holds a Canada Research Chair in Aging, Chronic Disease and Health Promotion Interventions in the School of Nursing at McMaster University. She has the appointment as a tenured associate professor in the School of Nursing, and associate member in Clinical Epidemiology and Biostatistics at McMaster University. At McMaster, she is also a co-scientific director of the Aging, Community and Health Research Unit.