Canada is undergoing a considerable amount of restructuring in the organization of health and long-term care1. The changes related to restructuring, in addition to the ageing Canadian population, are contributing to a shift in the provision of care for the elderly from 'formal' systems of care to 'informal' networks of family and friends1,2. As a result of this shift, it is estimated that family and friends are providing 80-90% of care for the elderly1,3,4. Furthermore, restructuring of the health care system has created additional challenges and barriers for geographically isolated individuals, including under-funded and less available services, difficulties in accessing necessary and adequate services and resources, lack of transportation, and long distances to travel to regionalized centers5-8. Geographically isolated communities (GIC) in Canada are characterized by:
...large, sparsely populated areas; small communities that are separated by challenging geography and climate; predominantly younger populations; large Aboriginal populations; a single resource base that is vulnerable to changes in the economy; and difficulties accessing health, education, and social services 9, p. 49.
In addition, studies have revealed that healthcare restructuring has resulted in particular challenges for Aboriginal women, the primary caregivers of Aboriginal elderly in GIC10. The challenges Aboriginal women face may be a result of the influence of such factors as traditional cultural values, beliefs, and practices; the limited nature of services available to geographically isolated Aboriginal communities; and the current economic and political contexts of Aboriginal health care11-12. In order to promote the health and wellbeing of Aboriginal women caregivers in GIC, an understanding of Aboriginal women's experiences of providing care to the elderly within this cultural context is essential.
The purpose of this ethnographic study was to develop a more comprehensive understanding of Aboriginal women's experiences and perceptions of providing care to the elderly in GIC, in order to promote the health and wellbeing of these caregivers. Two research questions guided the study:
- How do Aboriginal women living in GIC describe their experience of caring for the elderly?
- What are the broader contextual factors of caring for the elderly among Aboriginal women in GIC?
The majority of the research that has been conducted on caregiving describes perceptions and experiences of white, Anglo-Saxon individuals1,3,7,13-15, with a particular focus on women providing care for the elderly4,16-20, and on geographically isolated women providing care for the elderly3,7,16,21,22. Little attention has been given to Aboriginal women's caregiving experiences and health perceptions11,23. Furthermore, even less is known about the health perspectives and experiences of Aboriginal women who provide care to the elderly in GIC.
It is known that a large proportion of Aboriginal people provide care to elderly persons, due to the elderly persons' self-care limitations and complications associated with ageing and chronic disease23. Aboriginal women who provided care throughout the lifespan reported in several qualitative focus groups that culture played an important role in their caregiving experiences, expectations, and perceptions10. These women felt that providing their families with holistic, culturally appropriate care throughout the lifespan was an expected, traditional role for women within Aboriginal culture. Additionally, Aboriginal women in this study perceived their community and family as major sources of support and that many of the barriers to their caregiving were related to the unique sociopolitical position of Aboriginal people10.
However, most studies that focus on Aboriginal caregiving in GIC11,22 do not specifically concentrate on women and caregiving. Research that has been conducted regarding Aboriginal women's caregiving examined caregiving across the life span and the contextual factors of caregiving10, but did not focus exclusively on caring for elderly persons, or on care provided in GIC. Therefore, further insight about Aboriginal women's experiences of providing care to elderly persons in GIC is required in order to inform practice and policy decisions that promote Aboriginal women caregivers' health, as well as the health of the elderly people they care for in geographically isolated Aboriginal communities.
This study was guided by focused ethnography, a methodology that seeks an understanding of a sub-group within a cultural group by uncovering the less obvious expressions and behaviours of the sub-group members24,25. Focused ethnography is an appropriate methodology for this study because it explores a small sub-group of Aboriginal culture, namely Aboriginal women caregivers who provide care to the elderly in GIC, and it strives to create an understanding of the culture of women caregivers within the Aboriginal culture. This methodology uncovers contextual factors that are embedded within Aboriginal culture and GIC, as well as gains an understanding of how these factors shape Aboriginal women's day-to-day caregiving experiences.
After study approval was granted by the Research Ethics Board of the University of Western Ontario, Canada, participants were recruited through key informants located in 10 geographically isolated communities in northern and southern Ontario. Key informants were individuals with first-hand knowledge24 of Aboriginal women caregivers. Permission to recruit Aboriginal women was obtained through a variety of methods across Aboriginal communities. One community had a formal ethics process, five communities requested a letter to be forwarded to the community's Chief and Council for consideration at the next community meeting, and the remaining four communities requested that the researcher speak with the director of health or the community health nurse to explain the project. Once permission was granted, key informants were contacted to distribute letters of information to Aboriginal women who provided care to the elderly, and to place posters in local community offices, health centres, and other visible locations. Key informants forwarded contact information from consenting Aboriginal women caregivers to the primary researcher.
A purposive sample of 13 participants was obtained. This sample size was sufficient to meet the suggested sample size of 10 to 20 participants that is recommended for a focused ethnography26. The participants in the study ranged in age from 35 to 62 years (mean = 50.8 years), had lived in GIC from 9 to 62 years (mean = 38.5 years), and had provided care for the elderly, who were family and friends, from 4 months to 51 years (mean = 8.3 years). The majority of the elderly people (7 of 12) were family or friends living independently in the same community as the caregiver, and five of the elderly people resided with the caregiver. Seven of the elderly people were caregivers' mothers, with the remaining elderly being fathers, aunts, uncles, and cousins. Twelve of the 13 participants were employed outside of the home, and one of the participants was retired. The participants' annual personal income before income taxes ranged from $0-19 999 to $50 000-59 999 (mean = $30 000-39 999). Participants were employed in various settings, such as reception, program development, and healthcare settings. This sample of caregivers was highly educated, because participants' level of education varied from grade eight to graduate degrees, with 11 caregivers (85%) having completed some level of post-secondary education.
Participants were contacted via telephone and email to arrange times and locations for an interview. After each participant provided an informed consent, one-on-one interviews were conducted using a semi-structured interview guide. Extensive probing was used to encourage elaboration and the collection of rich and comprehensive data. Each interview was tape recorded and transcribed verbatim to ensure that accurate and complete data were available for analysis. Upon completion of the interviews, participants completed a demographic questionnaire, which provided additional information such as age, level of education, and socio-economic status. Following each interview, field notes were completed in order to capture observational data and personal reflections about the interviews. Data collection continued until data saturation was achieved26.
Inductive analysis of the data was conducted with the guidance of Lofland, Snow, Anderson, and Lofland's27 data-based strategies for analysis. Analysis began during the data collection phase when observational and interview data were collected. After each interview was completed, it was transcribed verbatim and analyzed line by line. Notes were recorded in transcript margins to highlight the importance and meaning of interview data. Using open coding methods27, both common and exceptional perspectives were noted. These perspectives were then collated into similar groups of codes. Each code was analyzed and described in order to develop a comprehensive understanding of what the specific code represented, a process called 'memoing'27. As codes were memoed they were collapsed or expanded, depending on how they compared with other codes. For example, once a broad understanding of participants' experiences was achieved, codes such as reciprocating care and strong native women were collapsed into focused codes or themes such as being chosen to care. Diagramming facilitated analysis by visually displaying the relationships that emerged during analysis27 (Fig1).
Figure 1: The Circles of Caring: experiences of aboriginal women caregivers of the elderly in geographically isolated communities.
Study findings revealed that the Aboriginal women caregivers' experiences occurred within the context of the healers, the family, the Aboriginal community, and the non-Aboriginal community (Fig1). Additionally, the term 'caring' is used instead of 'caregiving', because caring is the word used by participants to describe their experiences. Between the circle of healers and the family circle is a solid line, with the exception of one door. This solid line signifies that the circle of healers is not open to all family members. The door represents that the healers are selected to care for the elderly. The dashed line between the family circle and the Aboriginal community circle represents the interconnectedness of the family and Aboriginal community. The third line between the Aboriginal community circle and the non-Aboriginal community circle is solid, with the exception of one door. This solid line represents the more bounded relationship between the Aboriginal and non-Aboriginal communities. The door represents the experience of women caregivers who open and close the door to the non-Aboriginal community's external resources and services. The Aboriginal women caregivers' experiences and perceptions of caring for the elderly in GIC were informed by cultural values. These cultural values are represented in the five themes within each of the interrelated circles: passing on traditions; being chosen to care; supporting the Circle of Healers; (re)establishing the Circles of Care; and accepting/refusing external resources.
The Circle of Healers
Healers are central to the Circles of Caring because they encompass the theme of passing on traditions. Passing on traditions was central to the circle of healers because it ensured the sustainability of the Circles of Caring, guaranteeing that there would always be someone to care for the elderly. Passing on traditions was initiated by the elder because they possessed the responsibility of teaching their children the values needed in order to be caring adults and parents within the Aboriginal culture. Through these values, women perceived caring as natural.
Passing on traditions was reflected within the women's experiences when they were young. Girls were taught to assume caring roles of assisting the elderly with activities of daily living, such as cleaning the house and running errands. The value of passing on traditions was instilled in the women as young girls, and revealed an expectation of reciprocity that they would care for the elderly as the elderly cared for them as children:
...like there's almost a sense of it's all part of the circle, they cared for us when we needed care, you know, as children...my mom is still like that if I'm not feeling well...
As a result of being taught to care at a young age, women passed on the tradition of caring to their own children. This was enacted by role-modeling, where the women were caring for the elderly relative and, in return, their children saw the value of caring:
...I have a daughter who's ten and it's kind of nice for her because it's also teaching her that she has to be responsible for her aunt as well, you know, like helping her put her boots on, help her get this, go and get that for her.
The door between the circle of healers and the family circle represented the theme of being chosen to care. This door was opened by the elderly who chose the woman to care for them. The participants accepted this responsibility because it was unheard of to deny the elderly care.
Being chosen to care was also determined by gender. Women were chosen to care because Aboriginal women were defined as being strong, and as the ones who kept their families and communities healthy and united. Thus, female children were expected to care for the elderly as they aged. Traditionally, it was seen as their job. This expectation continues today, potentially placing pressure on women to feel that it is their responsibility to provide care:
...I don't feel good because this work [pointing to the computer] is pulling me away, I would rather be with her than writing this exam, career is second for me...my family comes first and this stuff is just add-on...if she needed care, I would easily drop this and go on welfare and look after her before I would put her in a home....It's our culture, you know, at least that part is still there, like we were all there taking care of each other, and I think because she taught us that, not that we had to take care of her, but through her actions and always being there to help us and help other people, that's in our nature, that's just who we are....I would expect the same thing of my kids...I live and try to listen to my spirit and do what I feel I'm supposed to be doing, that's the way it's supposed to be.
The Family Circle
Surrounding the circle of healers was the family circle. Within participants' Aboriginal culture, families were perceived as close knit and worked together supporting the circle of healers. The entire family contributed to caring for the elderly in different ways as they provided meals, transportation, finances, social support, and continuous care. Participants' family size varied: some of the women were members of large family networks, whereas others were an only child. Regardless of the size of the family, the women were able to rely on siblings, relatives, and friends for support.
Although the women in the study lived in under-resourced GIC, they did not perceive this as a problem when providing care for the elderly, because they were surrounded by their families who could offer support. Furthermore, the women perceived the smaller communities as ideal settings for providing care because they had substantial amounts of social support from families and friends:
...I see it as a positive, I wouldn't live in the city, I wouldn't want her living in the city or, I think it makes it more proper because she has her community around her and it's all her family...I don't know whether it would be any different if I was in the city with her. I would probably worry about her more if I was in the city, cause I don't like the city, like I see it as crime and dirty and, this way I don't have to worry about her as much here, surrounded by family.
The Aboriginal Community Circle
Surrounding the family circle is the Aboriginal community. The family and the Aboriginal community are interconnected because, within Aboriginal communities, there is not a clear delineation of who is family or friend. Family membership is extended to close friends who are then considered as cousin, aunt, or uncle. Through this interconnectedness, Aboriginal communities and families in this study were working together (re)establishing the Circles of Care.
Participants discussed how they and their communities were returning to practising traditional culture and values. According to the participants, many Aboriginal traditions were lost or hidden as a result of the non-Aboriginal culture imposing values on Aboriginal people in attempts to assimilate them into mainstream society. Aboriginal people were sent to residential schools that encouraged assimilation and suppressed cultural practices. Removed from their families and communities, the women explained that there was no opportunity to learn about their culture or accompanying traditions, roles, and values. They spoke of being a product of the residential school environment or being raised by parents who never learned their culture.
Women in this study claimed that caring was the one value that was maintained from the past. Caring was central as it facilitated Aboriginal communities to work together to revitalize their culture. Through traditional practices, sharing experiences, instilling cultural values in schools, using different methods to educate others, and learning from the elderly, the Circles of Caring were being recreated by the entire community. Through (re)establishing the Circles of Caring, the women felt strong and proud of who they were as they were opening the door to a new (old) way of valuing themselves as Aboriginal communities:
...we had all gone to residential school, so we didn't have that knowledge...so it made a big difference from '92 to 2002, like that 10 year timeframe and how much we had learned up to that point. My two younger sons at the time were in their late teens, even in their twenties, they had walked the red rope for 2 years, they were following the pow-wow trail and learning all about the culture. They taught me so much about it.
The Non-Aboriginal Community Circle
Surrounding the three Aboriginal Circles of Caring was the non-Aboriginal community circle. Aboriginal women caregivers in this study reported that they were sometimes dependent on the resources of the non-Aboriginal community in order to provide care to the elderly. The resources of the non-Aboriginal community that the women and elderly depended upon in this study were healthcare providers and services. Therefore, accepting/refusing external resources was essential to caring. The way in which the non-Aboriginal community was 'allowed' into the Aboriginal community is represented by a door. The opening of this door was based on how effectively or appropriately the non-Aboriginal community supported the Circles of Caring. Although Aboriginal women in this study used formal healthcare services, these services were not always seen as appropriate. When the women spoke of negative experiences, they referred to the non-Aboriginal community service providers as 'outsiders'. However, healthcare providers who demonstrated respect for the Aboriginal community and supported the Circles of Caring were welcomed into the Aboriginal community. Women in this study also struggled with the competing values of individualism of the non-Aboriginal community and collectivism of the Aboriginal community. According to participants, the non-Aboriginal community was a society that valued individualism, where each person strives to be self-sufficient. In contrast, the Aboriginal community is based on collectivism where everyone provides and cares for everyone:
...it's the values, a lot of them get caught in that other mode where it's all economic and career driven, so a lot of other values are put on the back burner. But I see, like my kids can see that difference too, and, like they'll talk about that, about what's different and what's similar, I guess like, self absorbed, and, I mean they are kids at a point, but they can see it, and...I think it's naturally passed down through our culture and our family values.
Reconciling the competing values of caring created barriers that affected the provision of care for the elderly. These barriers were related to incongruent cultural values and the lack of culturally appropriate support by healthcare providers, which closed the door to the Aboriginal community. Closing the door to the Aboriginal community meant that the women were often providing care for the elderly without necessary resources.
When participants discussed positive experiences, they described healthcare providers who actively supported and accepted the women's cultural traditions and values. Positive experiences were also associated with the desire to incorporate traditional healing within the non-Aboriginal community's healthcare model.
Participants felt that the door between the non-Aboriginal and Aboriginal communities could be opened by Aboriginal healthcare providers because they have an inherent understanding of the Circles of Caring, while also being able to provide the necessary external resources. Incorporating Aboriginal community's values into the non-Aboriginal community's health practices was seen as placing the power back in Aboriginal people's hands, thereby helping them to create control over their own lives and communities:
...I could see more prevention and more of looking at what did that was natural, trying to bring that back in like natural foods, natural things, exercise, things like that...so I see the health profession doing more of that and incorporating more of that, so it's not just writing prescriptions and treating the disease...that's what the healers would do, they teach that, so it's incorporated in both, like not getting rid of technology and the medicines and that, putting that responsibility back in that person, helping them to get a more balanced life.
In summary, exploring the perceptions and experiences of Aboriginal women caring for the elderly in GIC illuminated the Circles of Caring, which consisted of healers, the family, the Aboriginal community, and the non-Aboriginal community. Furthermore, each of these circles are interconnected by five dynamic processes: passing on traditions; being chosen to care; supporting the circle of healers; (re)establishing the circles of care; and accepting/refusing external resources. Developing a better understanding of the Circles of Caring and their corresponding processes may be a first step toward establishing culturally competent recommendations for healthcare practice and research.
This study highlighted several key insights regarding the experiences and perceptions of Aboriginal women as caregivers of elderly relatives in GIC:
- the interconnectedness of the three concentric circles within the Aboriginal community
- the tenuous relationship between the non-Aboriginal and the Aboriginal communities
- the importance of social support as a major determinant of Aboriginal women caregivers' health.
The first insight is the interconnections among the three concentric circles within the Aboriginal community. The three concentric circles include the healers, the family, and the Aboriginal community. The innermost circle represents the circle of healers, the women who provided care to elderly persons. The practice of healing was not open to the entire family nor to the entire Aboriginal community. Rather, the selection and inclusion of specific individuals into the circle of healing was controlled through a door. The door opened for the women in this study because they were chosen to care.
Being chosen to care was culturally determined and determined by the preference of the older adult and the gender of the caregivers. These factors contributed to the expectations of Aboriginal women to provide care to elderly people. Although preference and gender have been found in previous caregiving studies5,7,14,18-20, the Aboriginal women in this study expressed feeling 'honoured' to assume caregiving roles, as opposed to feeling stress and burden, and they perceived caring to be honourable because they had the opportunity to fulfill culturally prescribed roles.
Within the Aboriginal community, caregiving is valued. Similar to Gahagan et al's10 findings that caring is perceived as a traditional role for Aboriginal women, the current study enriched understanding about how and why Aboriginal women were chosen to become healers. Aboriginal and non-Aboriginal women caregivers may have different perceptions and experiences regarding caregiving. The context of healthcare restructuring within the non-Aboriginal community has inherently placed the majority of caregiving of elderly people on to female family caregivers16-20 with limited formal supports5,7,14,18,20. The interconnectedness between the family and Aboriginal community provided the women in this study with additional support that assisted them to provide care. Providing care to the elderly without this type of support was seen as unmanageable by study participants. However, non-Aboriginal women may be experiencing similar or even more problematic caregiving situations, given that they typically do not have access to the types of social support that participants in this study enjoyed.
The strong social support networks within Aboriginal families and their communities have been explored in other studies10,23,28. However, this study revealed how the family worked together to support the healers and the values that were integrated within the women's caring experiences and perceptions. Although not everyone was chosen to be included in the circle of healers, everyone within the Aboriginal community supported the circle of healers. Family support demonstrated the value placed on caring. Gaining insight into the important role of family for the care of elderly persons in Aboriginal communities is vital for healthcare providers to offer culturally appropriate care.
The third circle represented the Aboriginal community. In this study, the Aboriginal communities played a large role in the experiences of the family and the circle of healers as the entire community worked together to recreate the Circles of Caring. This collaboration of communities, families, and healers reinforced the embedded values of caring for the elderly. These common values enacted through cultural traditions were the links between and among the circles of healers, the family, and the Aboriginal community. By working together, the Aboriginal community was reinforcing and recreating the traditional value of caring for one another29. Understanding this collective approach to caring for elderly persons in the Aboriginal community is essential for healthcare providers to offer culturally appropriate care29.
The second insight gained through this study was the tenuous relationship between the non-Aboriginal and Aboriginal communities. This relationship was tenuous as it was shaped by relationships that reflected both positive and negative experiences the women encountered when accepting/refusing external resources. When accepting/refusing external resources, participants struggled to reconcile the competing values of the non-Aboriginal and Aboriginal communities. This struggle created negative experiences for the women as they had to decide whether to internalize the non-Aboriginal values and set aside their own Aboriginal values, or to resist the non-Aboriginal community values and potentially compromise care for the elderly. Women internalized the non-Aboriginal community's values if they were similar but, if the values greatly differed, the women would resist and shut out the non-Aboriginal community.
Entry into and out of the non-Aboriginal community was partly controlled by the Aboriginal women's need to access external resources that were necessary to provide care. However, just because the women opened the door to the non-Aboriginal community did not mean that the door was open for the non-Aboriginal community to enter at their own will. Sometimes external resources were inappropriate; women might still open the door because of need, not choice. In some instances, the non-Aboriginal community 'kicked the door open' to the Aboriginal community, imposing their values of caregiving and being disrespectful of the Aboriginal community and culture, creating negative experiences for the participants. This caused the women to close the door, closing off access to necessary resources. However, there were times when the Aboriginal community opened the door to let in members from the non-Aboriginal community, especially if care offered was congruent with Aboriginal values. In these situations, relationships between the non-Aboriginal and Aboriginal communities were built on mutual respect, not dominance and control.
Browne30 and Browne and Fiske31 discuss the importance of health care providers demonstrating respect within the Aboriginal community. This respect conveys equality, acceptance, patience, understanding, and sincerity to Aboriginal women30. Although the findings from these studies are similar to the insights gained in this study, our findings detail how and why the non-Aboriginal community may be locked out or not welcomed into the Aboriginal community. Locking the door to the non-Aboriginal community prevents the Aboriginal community from accessing necessary resources. This insight suggests future researchers need to further explore mechanisms that open and close the door between the non-Aboriginal and Aboriginal communities. In addition, it is important that future research considers other perspectives of the Aboriginal community, such as those of the elderly, the family, and community members. These additional perspectives could assist in developing a comprehensive understanding of how relationships between non-Aboriginal and Aboriginal communities could be improved in order to promote the health and wellbeing of Aboriginal women caregivers and the elderly persons for whom they care.
The third insight gained in this study relates to the importance of a supportive environment for Aboriginal women who provide care to the elderly. In this study, having a supportive environment decreased the perception of being geographically isolated. Gahagan et al10 found that Aboriginal women caregivers living in Aboriginal communities identified their communities as major sources of support for respite and emotional care. In our study, support from families and friends was described as more than respite care. Families and communities worked together to support the circle of healers by reinforcing the values and traditions embedded within caring. This sort of collaboration among Aboriginal families and communities provided a strong sense of cultural unity, making geographically 'isolated' Aboriginal communities supportive settings in which these women could provide care.
In non-Aboriginal communities, social support may be absent or insufficient to meet caregiver needs17. Absence of social support contributes to the social isolation of women caregivers16. In contrast, this study demonstrated how substantial social support within Aboriginal communities decreased the women's perceptions of feeling geographically or socially isolated. This concept of social support is important as it expands the current understanding of how social support is embedded within caregiving experiences and perceptions of Aboriginal women. Thus, this study found that social support was a major determinant of health for Aboriginal women in GIC who are caring for elderly relatives and friends.
While this study highlighted several important findings, the study was limited by the exclusion of the experiences and perspectives of the elderly, the family, the Aboriginal community, and the non-Aboriginal community. Future ethnographic research which includes these additional perspectives is imperative in order to fully understand the cultural beliefs and practices of Aboriginal and non-Aboriginal communities.
The insights gained in this study have built upon and enriched knowledge about the experiences and perceptions of Aboriginal women caregiver's health and wellbeing in GIC. Specially, this study has illuminated the intricacies of the three concentric circles within the Aboriginal community; the tenuous relationship between the non-Aboriginal and Aboriginal communities; and the importance of social support as a major determinant of Aboriginal women caregiver's health. These insights provide important information and direction for healthcare practice and future research. A comprehensive understanding of how Aboriginal communities work together to support the circle of healers could assist Aboriginal and non-Aboriginal communities to develop positive and supportive relationships. These renewed relationships may result in enriched promotion of health and wellbeing of Aboriginal women caregivers, elderly, families, and communities.
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