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Article

Being a Black Mother Living with HIV Is a “Whole Story”: Implications for Intersectionality Approach

by
Josephine B. Etowa
1,*,
Doris M. Kakuru
2 and
Egbe B. Etowa
3
1
School of Nursing, Faculty of Health Sciences, University of Ottawa, 451 Smyth Road, Ottawa, ON K1H 8M5, Canada
2
School of Child and Youth Care, Faculty of Human and Social Development, University of Victoria, 3800 Finnerty Road, Victoria, BC V8P 52C, Canada
3
Daphne Cockwell School of Nursing, Faculty of Community Services, Toronto Metropolitan University, Toronto, ON M5B 2K3, Canada
*
Author to whom correspondence should be addressed.
Women 2022, 2(4), 326-338; https://doi.org/10.3390/women2040030
Submission received: 24 July 2022 / Revised: 21 September 2022 / Accepted: 22 September 2022 / Published: 28 September 2022
Versions Notes

Abstract

:
While African, Caribbean, and Black (ACB) mothers living with HIV in Canada are required to follow public health guidelines by exclusively formula feeding their infants, they also face cultural expectations from peers and family members to breastfeed. They face multiple challenges because of their race, ethnicity, gender, class, and geographical location, among other factors. Previously published studies on this subject did not analyze how the intersectionality of these factors impacts Black mothers’ infant feeding experiences. In this article, we discuss the infant feeding practices of Black mothers living with HIV in Ottawa (Canada). We followed a qualitative methods research design that utilized intersectionality and a community-based participatory research approach. We used the intersectionality framework as a lens to analyze the complex mesh of determinants influencing motherhood experiences of ACB women living with HIV. Being a Black/ACB mother while living with HIV is a “whole story” permeated with cutting-across issues such as race, class, gender, socio-political, and cultural contexts. These issues are interwoven and often difficult to unravel. Multiple layers of structural determinants of Black/ACB women’s HIV vulnerability and health are described. Intersectionality is important for an in-depth understanding of societal power dynamics and their impact on women’s health inequities.

1. Introduction

Black people account for 3.5% of Canada’s population, and 52% of Black people in Canada are immigrants [1]. Women account for 52% of the global population aged 15 or older living with HIV [2]. According to Canada’s national HIV estimates, females constitute 23.4% of all people with HIV in Canada, and Ontario is the province with the fourth-highest HIV prevalence in Canada [3]. Fifty-four percent of Canada’s visible minority immigrants make Ontario their home. Although ACB people make up only 4.3% of Ontario’s population, they account for 18% of those infected with HIV through heterosexual contact, and women constitute about 40% of ACB people infected with HIV through heterosexual contact [4]. While remarkable achievements have been made since 1995 to fight HIV and save lives, including the massive scale-up of antiretroviral therapy (ART) [5], the complex problems associated with HIV infection still require focused attention. One such challenge is the vertical/mother-to-child transmission (MTCT) of HIV to infants. Despite the progress made toward eliminating MTCT, it is estimated that 160,000 children 0–14 years became infected with HIV in 2018 [6]. Although breastfeeding has various advantages, including infant food security [7], it is a route through which HIV is potentially transmitted from the mother to infants.
Prevention strategies to reduce MTCT have evolved through initiatives such as routine prenatal screening, mother and infant antiretroviral prophylaxis, caesarean section, and avoidance of all breastfeeding [8]. With emerging research on modes of preventing MTCT, and antiretroviral therapy (ART), infant feeding choices for women living with HIV are constantly changing. In 2010, the World Health Organization (WHO) [9] recommended continuous breastfeeding by women living with HIV until the infant is 12 months old, provided the mother and/or baby are taking antiretroviral (ARV) therapy during the same period [9,10]. However, the guidelines recommend avoiding breastfeeding if formula feeding is accessible, feasible, affordable, sustainable and safe. Consequently, the implementation of the guidelines varies globally. For instance, while Western countries such as Canada and the United States recommend exclusive formula feeding (EFF) [11], exclusive breastfeeding is recommended for countries in the global South [10].
The different guidelines create some personal tension for African, Caribbean, and Black (ACB) (also known as Black) mothers, especially those living in countries such as Canada because of the significant influence of cultural norms on mothering [12]. (We use the concept of Black interchangeably with that of African, Caribbean, and Black (ACB) to capture immigrant women from the continent of Africa (A), from the Caribbean (C), and those who have lived in Canada for multiple generations as Black (B).) Breastfeeding is the norm in the global South though not as common in urban areas, while in the global North, breastfeeding rates are lower for groups with low education and income [7]. Although Canada is largely a formula -feeding nation where breastfeeding is sometimes initiated but not completed [13], not all mothers favor formula-feeding. Some mothers have cultural values that require them to either breastfeed or practice mixed feeding [14,15,16,17]. Culture not only determines the care available to women but also socializes and educates, thereby eliciting the desire for a particular style of care [18]. Black/ACB mothers who are living with HIV in Canada, therefore, face the professional expectation to follow the guidelines by EFF, while at the same time confronting the cultural expectations from peers and family members to breastfeed their infants. This study examined the infant-feeding experiences of ACB mothers living with HIV within the contexts of the cultural expectations, personal tensions, and guidelines surrounding infant feeding choices and practices.
Although remarkable gains have been made in reducing the MTCT of HIV in Canada through increased HIV testing and increased access to ART and infant formula to women living with HIV, HIV/AIDS, and MTCT remain important public health concerns. These strategies have reduced the risk of vertical transmission during pregnancy and delivery. However, subsequent transmission through breastfeeding presents an important channel through which infants can become infected with HIV. According to the WHO [19], the transmission of HIV can take place during lactation or through breastfeeding. However, the precise magnitude of the risk varies significantly depending on several other factors such as the time since becoming infected. Many Black/ACB mothers view breastfeeding as a symbol of “good motherhood” and the “natural” way of feeding a baby. They may be compelled to breastfeed despite their knowledge of the high HIV transmission risk through breast milk and to avoid the label of “bad mother” and the speculation about their HIV status. Feeding decisions are further complicated by public health messaging on the benefits of breastfeeding, alongside HIV clinical practice guidelines that recommend exclusive formula feeding (EFF) for HIV-positive mothers. Being told by public health staff that “breastmilk is best” for the baby, yet risking consequences of breastfeeding such as involvement with child protection services, is the reality for many mothers living with HIV. Cultural expectations further compound the issue for Black/ACB mothers. There is a dearth of studies that examine the practices and experiences of Black/ACB mothers, especially those living in the Western world, in the contexts of living with HIV and adhering to national infant feeding guidelines within the spaces of socio-cultural expectations of motherhood.
Some studies focusing on women living with HIV have investigated factors influencing infant feeding choices such as health workers’ attitudes, societal, familial, occupational, and economic factors [14,16,20,21]. Existing literature illuminates the role played by African socio-cultural beliefs and values in infant feeding choices (e.g., [14,22]). These studies elaborate on the insurmountable culture-related infant-feeding challenges faced by Black/ACB mothers living with HIV. Greene et al. [17] discuss how Canadian mothers living with HIV, who migrated from Africa, where breastfeeding is the norm, are concerned that not breastfeeding implies involuntary disclosure of their HIV status. While previously published studies have described the factors influencing infant feeding choices of women living with HIV, there has been no focus on the intersectionality of these factors and the mothers’ experiences. We contend that addressing the multiple layers of structural determinants of Black/ACB mothers’ HIV vulnerability and health is of utter importance. This paper discusses how the intersections of racism, sexism, gender constructions, classism, and “HIV-positive mother” and ethnicity compromised Black/ACB mothers’ health and motherhood, specifically their infant feeding experiences.

Social Determinants of Health and Intersectionality

Intersectionality is an analytical tool for understanding and interpreting the complexity of the social world around us [23]. It underscores the nature of compounded discrimination and emphasizes the intersection of contextual factors such as race, culture, gender, class, and others [24]. According to Crenshaw [25], individuals are situated in multiple heterogeneous categories or groups of identity. Individuals within these groups have overlapping intersectional identities and therefore face complex intersecting structures of injustice or disadvantage [26,27]. While health researchers have historically treated the relationships among socio-demographic factors such as race, class, gender, and health as isolated, independent variables, more recent theorizing is acknowledging the fact that these constructs are not autonomous [25]. Instead, people’s identity lies at the intersection of variables such as race, class, and gender, and it is the combination of these constructs that often shapes people’s experiences with the health care system and other social structures [26]. In the case of the women in our study, these variables of race, gender, and class overlap with their seropositive status, and the related issues of stigma and discrimination to negatively influence their motherhood and infant feeding experiences.
Social determinants of health (SDHs) are the structural determinants and conditions of daily life or the economic and social factors that shape people’s health as individuals, communities, and jurisdictions [28,29]. They determine people’s state of health, the extent to which they possess the necessary resources to identify and achieve the personal aspirations, satisfy their needs, and cope with the environment [29]. Hence, health inequities are due to the unequal distribution of power, income, goods, services, and people’s chances of leading a flourishing life [28]. According to Raphael [29], SDHs include conditions of childhood; access to income; education and literacy; food, housing, and employment; working conditions; and health and social services. McGibbon and Etowa [30] expanded this list to include race, social class, gender, ethnicity, culture, sexual orientation, age, (dis)ability, and geography, among others. Although ACB mothers living with HIV increasingly aspire to have children, their experiences are characterized by the negative impact of psychological and emotional health stressors [13]. Worse, women-centered HIV services for mothers living with HIV in Canada are inadequate [31]. In keeping with Crenshaw’s [27] approach to intersectional analysis, this article will situate ACB mothers’ experiences of infant feeding while living with HIV within the context of the social determinants of health. We contend that the infant feeding experiences of ACB mothers living with HIV in Canada are often shaped by the intersections of their race with other dimensions of their identities such as social class, gender, ethnicity, culture, sexual orientation, age, and (dis)ability.

2. Results

2.1. Socio-Demographic Characteristics of the Mothers

Table 1 provides a descriptive analysis of the mothers’ socio-demographic characteristics. The average age was (36.6 ± 6.4) and 66.5% (n = 57) were unmarried. Household sizes ranged from 1 to 7 persons with the majority having four persons. Precisely 56.80% had completed university education and 38.6% (n = 34) had completed high school, technical, or vocational education. More than half (n = 51, 57.3%) of the mothers were in either full-time or part-time employment. The mothers had lived with HIV for an average period of 12.7 ± 6.4 years.
The study findings reveal how Black/ACB mothers living in Ottawa navigated life as mothers responsible for infant feeding decisions, as women who are Black, and as people who live with HIV. In addition, some of these mothers have limited education, are underemployed or unemployed, and depend on social assistance for survival. Each of these social locations puts unique and compounding impacts on ACB mother’s infant feeding choices and experiences. The study findings clearly demonstrate how the experience of “being a Black mother while living with HIV is a ‘whole story’…” (mother 11) cutting across issues of race, class, and gender, and these pieces are often difficult to tease apart. We, therefore, must tell the whole story with approaches such as the HIV prevention combination approach/social determinants of health framework. The results are presented under the following themes: living with HIV and being a mother, fear of infecting the baby, HIV-related stigma, being a Black woman, and “neighborhood”.

2.2. Living with HIV and Being a Black Mother

All mothers who live with HIV deal with various issues related to their health and the health of their babies. For example, mothers who have just learned that they are HIV-seropositive require time to adjust to this information. Some of them have very limited knowledge about HIV, as demonstrated in the narrative of a participant who mentioned, “when I found out I was HIV positive, I uhm, I thought my life was done because I had relatives who had suffered the same disease and then…they died. Like they suffered with the disease… so I thought I was going to be like that” (Mother no. 5). ACB mothers’ lack of adequate HIV knowledge might also impact their infant feeding choices.
Women also talked about the stigma associated with a positive HIV status. One woman described how she felt uncomfortable as follows, “First…, I was not comfortable. I did not want people to know about my situation. Because, back home, people always stay away from you. Even here in Canada, some people still have that ‘African’ attitude” (Mother no. 10). We found that HIV-related stigma, directly and indirectly, influenced mothers’ infant feeding choices and experiences.
Living with HIV includes adhering to the treatment regime to effectively suppress viral load, as well as deal with stigma and discrimination. Some mothers’ ability to adapt to these realities was influenced by their pre-migration misconceptions about HIV and motherhood. Some mothers expressed that they were not sure of how to navigate motherhood while living with HIV, while others contemplated terminating the pregnancy after finding out about their seropositive status as illustrated in the quotation below:
“Ugh, my life changed when I got pregnant, and I had HIV. And then I had to answer questions like ‘Do I have to abort this baby because I have HIV? Or [do I] have to have a baby?’ I asked the doctor this question because if I had decided for myself, I would have taken the baby away because of the sickness. I said no, ‘if I’m ok, will it be ok for me to have the baby?’ The family doctor said to me, ‘[Participant’s Name], you will be ok. If you take your medicine and have a C-section and don’t breastfeed, the baby will be ok’”.
(Mother no. 4)
The importance of adhering to a treatment plan to suppress viral load was also highlighted for this participant. She said:
“Like someone who is living with HIV, and they have children? Yes, they should keep up with their medication. Because when they are having the medication, that keeps the viral load low. When you take the medication, you keep the virus low, but you still have the virus”.
(Mother no. 5)
Others talked about how the multiple demands of living with HIV add to the already stressful pregnancy and motherhood experience. One woman recalled, “My life has changed a lot! It has changed a lot because not only was I a mother and pregnant, which came with its own set of challenges but adding being HIV positive to it? wow!” (Mother no. 1). Similarly, another participant commented about the “triple jeopardy” effect of dealing with pregnancy, seropositive status, and breastfeeding. She said:
I kept busy to keep myself away from stress. Take away that stress that I am positive. And then the children, my children. Would they be healthy or not?…. Because how was I going to deal with this? I’m pregnant. I’m HIV positive. And I’m not going to [be] breastfeeding. It was hard for me the first time….
(Mother no. 10)
The responses from the mothers cited above demonstrate the intersecting impact of the many infant feeding issues Black/ACB women faced in the process of mothering while living with HIV. Many mothers hold the cultural belief that breastfeeding is a part of good motherhood, which is reinforced by public health messaging that “breastmilk is best” [17]. However, living with HIV creates a social concern about the repercussions associated with breastfeeding given the infant feeding guidelines for mothers living with HIV [32]. Moreover, mothers’ concerns about the risk of their babies contracting HIV influence their infant feeding choices and hence their motherhood experiences. At the same time, ACB women face intense cultural, familial, and peer pressures to breastfeed, which diminish their motherhood outcomes due to associated heightened vigilance, stigma, discrimination, and maternal stress. The findings of this study show that infant Black/ACB mothers living with HIV experience infant feeding tensions unique to them. This is because, among ACB people including women, breastfeeding is viewed as a symbol of good motherhood and the natural way of feeding a baby. Within these communities, mothers who do not breastfeed are either assumed to be living with HIV (which is highly stigmatized), or abnormal. Mothers who do not breastfeed have also been perceived to be cruel and abandoning their culture [33]. The intersectional nature of the Black motherhood experience, while living with HIV within the socio-cultural context of infant feeding was evident. Although all mothers living with HIV face unique challenges, the findings show an additional layer of complexity when it comes to Black motherhood and infant feeding mainly due to ACB cultural values that despise EFF.

2.3. Fear of Infecting the Baby with HIV

We found that many mothers did whatever they felt would prevent their babies from contracting HIV. They adhered to the recommended feeding practices. Mothers who participated in this study expressed their regrets about having to formula-feed instead of breastfeeding like other mothers who are not living with HIV. For example, one mother asserted: “I am a mother. Being a mother gives me the guarantee to feed my baby, but [then] again, I am positive, so I cannot feed my baby... “ (Mother 1). Another mother said:
“I wish I could breastfeed! I’d love that. I want… I wish I could breastfeed than give my children formula all the time. I’m a mother, and I haven’t experienced breastfeeding, how it feels. I’ve seen people, but I haven’t felt it. So, if there was any way, I’d love to breastfeed my child, my children”.
(Mother 5)
Although breastfeeding is an important aspect of the Black motherhood experience, the fear of transmitting HIV to one’s baby compelled many mothers to formula-feed their babies instead albeit with regrets. The centrality of breastfeeding in the motherhood experience was highlighted by this woman:
“It affected me. It’s almost like, the same thing that I am talking about yeah, because motherhood comes with breastfeeding, but that part was cut off for me. So, yeah, I accepted that I became a mother, but there’s another part that I am not experiencing as a mother, which is breastfeeding. So, it was a bit hard”.
(Mother 1)
These findings suggest that mothers had unsatisfactory infant feeding experiences. The national infant feeding guidelines bar them from breastfeeding because of their HIV serostatus, while breastfeeding is considered a key attribute of good motherhood according to the ACB cultural values. The inability to breastfeed is a source of stress since it evokes questions from their peers, family, and relatives. It is also a source of stigma as elaborated in the next section.

2.4. HIV-Related Stigma

Black mothers living with HIV deal with negative perceptions from their family members resulting from their inability to breastfeed. This is because breastfeeding is the norm in ACB communities. Black mothers living with HIV who live with their relatives in Canada suffer additional burdens as illustrated below:
“It’s even good for me that I don’t have much family here. But I feel for those other Black Canadians who have their relatives here, for instance, the mother-in-law. It’s H-A-R-D! I am sure It’s ‘more H-A-R-D’ for them than it was for me… ”.
(Mother 1)
Similarly, one woman said, “and the good thing I don’t have any close extended family that would come at home and [be] watching me [asking] ‘What you are doing, what you are not doing’… ” (Mother 11). Yet another woman highlighted the important role of culture. She said:
“In my culture, they usually love people to breastfeed. Everyone in my family that I’ve seen has breastfed. I haven’t seen any milk or formula feeding. They usually feed until some kids are 18 months. One of my friends, fed her children until they were two years … ”.
(Mother 5)
She went on to elaborate with a vignette as follows:
“She [participant’s mother] was like ‘Put the child on!’ and I was like ‘No!’. I went to see her when [name of child withheld] was six months, so I was like ‘The milk dried a long time ago, so I cannot give it to the child.’ She called [name of husband withheld] about why I couldn’t breastfeed and [name of husband withheld] told her the story about how I had an infection after birth, and how I had to use antibiotics. And she tried to give me things to bring the milk back”.
(Mother 5)
Another participant cited below expressed similar concerns:
“I’m from [name of East African country withheld]. And the normal thing is to breastfeed a baby. There is no way they will believe from the time she was a newborn she has never had breast milk. Formula is unheard of”.
(Mother 9)
HIV creates a unique type of motherhood that involves mothers dealing with HIV-related stigma, while at the same time facing negative perceptions of infant feeding, and protecting their babies. The above findings, therefore demonstrate the challenges that emanate from the intersectionality of culture, infant feeding, living with HIV, and motherhood.

2.5. Being Black Woman and “Neighborhood” as a Determinant of Health

The excerpt below was taken from a conversation with a mother who clearly articulated how race, neighborhood, and social class overlap in the motherhood experiences of the participants of this study. She described:
Being a mother, and being in Canada, and being Black, it’s a whole story. Because you can, maybe hide your sexual orientation, but you cannot hide your skin colour. You cannot hide who you are as a male or female. You cannot hide that you have children. These are the things you cannot hide. You cannot hide that you’re pregnant. And all that will affect you as a human being, depending on where you come from, depending [on] what social class that you belong to. What neighborhood that you belong to.
(Mother 11)
According to this participant, being a Black woman living in Canada is already a disadvantage because of belonging to a minority race, which cannot be hidden. Additionally, the mothers’ inability to hide their gender, motherhood, and the neighborhood they belong to is another level of disadvantage that mothers living with HIV face. It might suggest that one’s gender, race, and class have negative consequences on their general life experiences which include infant feeding. According to the participant cited above, being visibly Black while living in Canada is only part of the story. Being a mother, living in a particular neighborhood, and living with HIV make up the other part. A narrative that separates these aspects of Black motherhood does not tell the “full story”. The same participant explained in the excerpts below how living with HIV as a Black person affects one’s life:
“At that time, I didn’t really have any knowledge to differentiate what is racist, what is stigma, and what is discrimination. And when sometime[s] I go back [to that] time I say definitely this was racism, definitely, this was because I have HIV that’s why they did that… After [the] years [went by], I understood that at that time how they treated me [was either] because I am HIV positive or because I am Black. One of them. Which one? I don’t know”.
(Mother 11)
The participant was referring to her experiences of being ignorant about the notions of racism, stigma and discrimination as a Black person. While other Black people may experience the same degree of racism, living with HIV adds another layer. According to the participant, it is difficult to tell whether her race or HIV status prompted people to treat her the way they did. This implies that indeed it is not possible to tell the whole story from the racial standpoint without also considering one’s HIV-seropositive status.

3. Discussion

Intersectionality is an analytical tool and theoretical lens used for understanding and interpreting the complexity of the world around us [23]. The findings of this research revealed that employing an intersectional approach to analyze the experiences of being a Black/ACB mother and living with HIV in Canada may facilitate the identification of the structural and representational factors underlying the infant feeding challenges that Black/ACB mothers face and how these might impact on various other aspects of their lives and the lives of their infants. Furthermore, adopting an intersectionality perspective to explore the experiences of infant feeding may shed light on vulnerable, invisible subpopulations of women such as Black/ACB mothers living with HIV in specific geographical locations, their social conditions such as class, stigma, discrimination, etc. These in turn create stress and heightened vigilance related to adherence to national infant feeding guidelines.
Past studies that investigated infant feeding largely focused on the experiences of women living with HIV in Canada. Studies by Ion et al. [13] and Greene et al. [17] for example focus on women of all races including Black women. They present the narratives of women who live with HIV as mothers and highlight challenges faced by such mothers including stigma. Our research extends this discussion to mothers, specifically women/females living with HIV to show how motherhood, socio-economic status and race further complicate their life experiences. In this study, intersectionality can therefore be regarded as a sensitizing concept that guided the analysis. Exploring Black motherhood through the lens of intersectionality emphasizes that women’s issues influenced by broader social factors do not occur in isolation but rather intersect and mutually enhance their negative impacts on health [34]. The intersectionality framework reminds researchers that while analyzing aspects of a single identity, we must always incorporate their compounded interaction with other identities and contextual factors such as class, religion, culture, race, gender, and others.
Our study, therefore, shows that motherhood among Black/ACB women living with HIV is not only about how a specific mother feels about themselves. It is socially constructed based on unified societal perceptions and values regarding motherhood, skin colour, socio-economic status, gender, and seropositive status. The study, therefore, responds to the paucity of literature on the integrated experiences of Black/ACB mothers living with HIV in a Canadian context. The study enhances understanding of the infant feeding experiences of Black/ACB mothers living with HIV in Canada and provides scientists with insight into their need for support.
Ion et al. [13], in agreement with Carter et al. [35], contend that it is important to have women-centered HIV care in order to adequately provide for the needs of mothers living with HIV in Canada. Additionally, we suggest a multi-pronged approach to health care for Black/ACB mothers living with HIV to include increased diversity in health care service delivery. Although the study participants were mothers involved in infant feeding at the time, these mothers require special services to support their wellbeing and that of their children. The supports could start at the time when they find out about their HIV and/or pregnancy. Further, in agreement with Ware et al. [36] and Carter et al. [37] we recommend the formation of peer support infant feeding groups for Black/ACB mothers living with HIV in Canada.
The findings of this study are congruent with the contention that using the intersectionality framework illustrates the importance of analysis that incorporates how the full repertoire of a person’s identities interact to qualitatively impact how they experience their role identity [24].
We further explored identity through the lens of intersectionality by moving beyond a single-axis framework of disadvantage to look at multiple differences and their intersections [38]. We contend that the intersectionality of these participants’ experiences of living with HIV, being women, being Black, and being mothers should be fully considered to order to clearly understand the realities of their motherhood process. The findings reveal that women’s experiences of living with HIV and being a mother intersect in intricate ways creating unique vulnerabilities for them. For example, their pre-migration and cultural beliefs and values pertaining to motherhood and infant-feeding contradict their post-migration experiences because of living with HIV. Another finding was that the participants occupy several unique positions each of which further complicates their stories as mothers, Black people, females, living with HIV, and living in Canada. According to the participants, being a Black mother living in Canada has challenges. Living with HIV further compounds these challenges because they must adjust not only their lives but also those of their children to HIV. For example, they must follow specific infant feeding guidelines that are incongruent with their pre-migration values and are thus ostracized among members of the Black/ACB community with whom they associate. The study also identified psychosocial and socio-cultural factors that accounted for the motherhood experiences of the ACB women living with HIV. The findings of this study highlight the importance of having multi-pronged strategies to specifically cater to Black mothers living with HIV in the global North. Such mothers face complex cultural demands in trying to comply with infant feeding guidelines and adjusting to the HIV lifestyle. The participants were vehemently opposed to the current one-size-fits-all approach to infant feeding. Further research could therefore be conducted to determine how best to adapt the current infant feeding guidelines to the specific situation of women who are Black/ACB, mothers, and living with HIV in Canada.
This study had some limitations. For example, we were unable to determine the influence of mothers’ own personal beliefs on their infant feeding and motherhood experiences from the data we gathered. The study only involved Black/ACB mothers in Ottawa, and therefore we are unable to extrapolate these findings to all Black mothers living with HIV in Canada. We cannot comment on the effects of immigration policies or access to job opportunities, health system integrity, or circumstances such as cultural tradition, socioeconomic status, single parenthood, and neighbourhood influences, which must also impact the lives of our participants, but which were not emphasized. The study only involved Black/ACB mothers in Ottawa and therefore we are unable to extrapolate these findings to all Black mothers living with HIV in Canada. Additionally, our paper is based on a sample of 11 mothers who are educated (at least 57% have college degrees), and therefore the research cannot be generalized on all Black HIV+ mothers in Ontario. However, the study findings provide important clues about the magnitude of the challenges faced by ACB mothers. We have articulated the difficulties these highly educated 11 women faced in navigating social exclusion, cultural issues, racism, and fear of disclosure. We suspect that less educated ACB women who are from lower socio-economic status may face more compounded challenges that our data is unable to elucidate. The findings provide adequate baseline information for scaling up this study to include Black mothers all over Canada. Future researchers could specifically replicate this study on uneducated and unemployed HIV+ mothers.

4. Materials and Methods

Study design: We conducted a community-based participatory research (CBPR) [39] mixed-methods study in Ottawa, the capital city of Canada, and this paper is based on the analysis of qualitative findings. CBPR has increasingly become popular as an epistemological approach that embraces the community as a collaborative partner and community members as knowledge co-creators who participate in, as well as benefit from the research process [40]. It has been applauded for its ability to generate outcomes that are meaningful to communities and for “strengthening the rigour and utility of science for community applicability” [41] (p. 56) and for its potential to provide an environment where the epistemological borders between theory and practice can be crossed [40]. It recognizes the diversity of experiences that inform a change in the right direction. In this study, CBPR was conducted by drawing from the experiential knowledge of ACB mothers living with HIV in the design and implementation of the study. Although the data for the analysis presented in this paper were from community-engaged activities including interviews conducted in Ottawa, throughout the project, we worked closely with health care professionals, HIV/AIDS service organizations, the community of people living with HIV, and Black/ACB mothers living with HIV. Community engagement activities were multi-phased and included preliminary community consultations, recruitment, focused ethnographic interviews, and quantitative surveys. Others include community stakeholder consultations involving HIV/AIDS advocates, representatives, service providers, and policy makers. Finally, the community was engaged in the co-creation of knowledge products including the production, pilot testing, and evaluation of culturally appropriate knowledge translation and exchange tools.
According to Higginbottom et al. [42], focused ethnographies are characterized by a conceptual orientation of a single researcher or research team; a focus on a discrete community, organization, or social phenomenon (e.g., HIV positive Black/ACB women, experiences of infant feeding in this sub-population); being problem-focused and context-specific (e.g., tensions surrounding public health messaging, socio-cultural expectations, and personal perceptions regarding infant feeding choices for Black women living with HIV); and a focus on a limited number of participants who usually hold specific knowledge, e.g., ethnoculturally defined infant feeding choices. Their purpose is often for the creation of health services and policy (e.g., enhancements to the provision of culturally appropriate infant feeding guidelines for women living with HIV/AIDS).
Our research examined the specific sub-culture of infant feeding while living with HIV within discrete subpopulations of Black/ACB women. We thought this was the most appropriate approach based on our research questions.
Data collection: Prior to the commencement of data collection, we obtained ethics approval from the University of Ottawa’s Health Sciences and Science Research Ethics Board (File number H08-16-27) in 2016. This was renewed in 2017 and 2018 as per the attached Ethics approval notices.
Recruitment: We identified 11 Black/ACB mothers of infants to participate in the qualitative component of the research. To be included in the study, the identified Black mothers must have had babies within the previous 5 years, were either English or French speakers and lived in Ottawa at the time of the study. Both primiparous and multiparous women were recruited. We attempted to achieve maximum variation [42,43] with respect to ethnicity, age, education, length of time since migration to Canada (if applicable), and social class/social economic status. The study participants were recruited at various locations, including community resource centers, public health facilities, AIDS service organizations, immigrant support agencies, pre-schools, and physician offices. Qualitative data were collected using focused ethnographic interviews.
We trained research assistants and graduate students, and project staff to purposively recruit Black/ACB mothers from the identified venues and social events. A total of 11 mothers participated in the interviews.
Data analysis: Qualitative data analysis was informed by the intersectionality lens [25]. Our data analysis aimed to understand how social determinants of health intersect to shape women’s beliefs about motherhood in the context of infant feeding during the infants’ first year of life. The analysis involved the identification and classification of the data, which then progresses to abstract generalizations and explanation of patterns. We explored the principle of Roper and Shapira [44] regarding ethnographic data analysis, with the following analytical steps (1) coding for descriptive labels; (2) sorting for patterns; (3) identification of outliers or negative cases; (4) generalizing with constructs and theories; and (5) memoing that included reflective remarks. NVivo, a qualitative data analysis software package, was used for data categorization, storage, and management.
All interviews were audio-recorded, transcribed, and entered into NVivo data analysis software which facilitated categorization, storage, and management. After coding the data using NVivo we generated themes and sub-themes, which we jointly interpreted to answer the research questions.
Trustworthiness: To achieve trustworthiness, reflective team meetings were conducted regularly to establish impressionistic views of the interviews and more detailed insights from the individual team members’ analyses. We revisited the data to reconsider any preliminary interpretations that yielded diverging views from members of the research team. Preconceptions and assumptions were identified and discussed until consensus in understanding the data was reached.

5. Conclusions

In this research, we explored the intersectionality of gender, motherhood, race, and health of Black women living with HIV in Canada. The study findings imply that programs to support Black mothers living with HIV could benefit from taking an intersectional approach. That might include wider issues that were outside the scope of this study, such as migration policies and structural issues that cause income inequities for ACB women. The multiple layers of structural determinants of Black mothers’ HIV vulnerability and health cannot continue to be ignored if we are to tell the full story and support them holistically.

Author Contributions

J.B.E. led the research design, data collection, and data analysis as the principal investigator. D.M.K. participated in writing the first draft of the manuscript. E.B.E. participated in data analysis and writing subsequent drafts of the manuscript. All authors have read and agreed to the published version of the manuscript.

Funding

This research was funded by the Canadian Institutes of Health Research grant number: FRN CBPR-144831.

Institutional Review Board Statement

The study was conducted according to the Tri-Council Policy statement (2010) and other applicable laws and regulations in Ontario. It was approved by the University of Ottawa Research Ethics Board (file number H08-16-27 on 8 December 2016).

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study.

Acknowledgments

We acknowledge all our study participants and all the project investigators and collaborators as well as community partners who made this study possible. These include project Co-PIs and other sites leads: Seye Babatunde, University of Port Harcourt, Nigeria; and Jean Hannan, Florida International University, USA.

Conflicts of Interest

The authors declare no conflict of interest.

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Table
Table 1. Descriptive analysis of participants’ sociodemographic characteristics.
Table 1. Descriptive analysis of participants’ sociodemographic characteristics.
Characteristicsn (%)
Mothers’ age, (M ± SD)36.6 ± 6.4
Relationship status:
     Single/separated/divorced/widowed57 (66.5)
     Married29 (33.3)
Number of persons in the household, MD(R)4(1–7)
Education:
   Primary school 1 (1.1)
   High school, technical or vocational school34 (38.6)
   College or university 50 (56.8)
Employment status:
   Employed (full-time or part-time) 51 (57.3)
   Unemployed 38 (42.7)
Duration since diagnosed with HIV (years, [M ± SD])12.7 ± 6.4
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Etowa, J.B.; Kakuru, D.M.; Etowa, E.B. Being a Black Mother Living with HIV Is a “Whole Story”: Implications for Intersectionality Approach. Women 2022, 2, 326-338. https://doi.org/10.3390/women2040030

AMA Style

Etowa JB, Kakuru DM, Etowa EB. Being a Black Mother Living with HIV Is a “Whole Story”: Implications for Intersectionality Approach. Women. 2022; 2(4):326-338. https://doi.org/10.3390/women2040030

Chicago/Turabian Style

Etowa, Josephine B., Doris M. Kakuru, and Egbe B. Etowa. 2022. "Being a Black Mother Living with HIV Is a “Whole Story”: Implications for Intersectionality Approach" Women 2, no. 4: 326-338. https://doi.org/10.3390/women2040030

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