Abstract
Introduction
It is tempting to seek simple solutions to intractable problems. Yet, challenges inherent in complex systems are underpinned by socio-cultural and historical factors not easily remedied through discrete interventions. For instance, in the South African health care system, some individuals may be considered more deserving of care than others; there is a disconnect between the egalitarian principle of Health for All and clinicians’ attitudes and behaviour. Perceptions of patients’ relative worthiness impact health-seeking behaviour and outcomes: those deemed unworthy may receive inferior care or be denied health services altogether (Burgess, 2016; Mtetwa et al., 2013; Wanyenze et al., 2017).
To address the complex challenge of unequal patient treatment, it is imperative to understand both its nuances and the context from which it emerges, rather than implement superficial interventions such as in-service ‘sensitisation’ workshops. Critical Participatory Action Research (CPAR) methodology offers a means to explore and reflect upon entrenched social and systemic challenges, such as those encountered within the South African health system, and consider ways to address it. CPAR is a form of action research that encourages groups to engage in analysis and self-reflection to address injustice and enact social change (Kemmis et al., 2013). The collaborative CPAR process calls for meaningful participation over time from an intimate group of co-researchers invested in the topic. A method whereby stakeholders come together to address a social problem, CPAR is neither intended to result in generalisable and objective findings, nor does it require a large sample size.
CPAR is an ongoing process of action and critical reflection (Kemmis et al., 2013; McNiff, 2013, Tracy, 2019) in which each step informs the next phase (Beaulieu, 2013). Critical reflection allows participants to explore how and why they justify their beliefs (Mezirow, 2000), particularly those that bolster inequality. Mezirow (2000) contended that critical reflection occurs through discourse, a type of dialogue that is central to making meaning (Mezirow, 1997) and requires only that participants are willing to seek understanding and reach consensus. In addition, CPAR provides an opportunity for people to engage with one another over time rather than take part in a single key informant interview or focus group discussion.
CPAR in action: worthiness determinations within the South African Primary Health Care system
To address a gap in knowledge regarding perceptions of patient worthiness, examine the factors that underlie such perceptions, and explore learning strategies to minimise the practice of triaging socially marginalised patients, I invited a purposive sample of nurses and cross-border migrant activists – a socially marginalised population in South Africa – to engage in CPAR with me over the course of a year. To guarantee a range of perspectives, I invited people who may not otherwise have the opportunity to explore the topic under consideration together. A lengthy recruitment process led to the enrolment of seven participants: three nurses and four cross-border migrants. My participation brought the total number of participants to eight.
Participants were invited to join an initial session in Cape Town, Western Cape Province. At the end of the session, I invited them to engage in further discussion about ways to shift perceptions of patient worthiness. In accordance with CPAR methodology, participants determined the parameters of the next phase of the research process, which promoted ownership and investment in the project. Since critical reflection requires a hiatus during which individuals may reassess their perspectives (Mezirow, 1990), participants proposed ways to engage with fellow group members throughout the study, including remote sessions to share critical reflections, and establishment of a WhatsApp group to encourage ongoing interaction. Sessions enabled participants to build rapport, consider one another’s motivations and perspectives, and interpret interim findings. Crucially, the CPAR methodology afforded the time and space to question and reflect upon our assumptions about this complex and sensitive topic.
The participant observer
I liken my dual role as CPAR group facilitator and participant to what Isaacs (1996) termed ‘providing the container’ (p. 24). I strove to foster an environment in which members felt welcome, recognised and comfortable sharing their perspectives on a challenging topic. Serving in a dual role allowed me to question assumptions from two distinct vantage points. I believe it also increased the likelihood that group members perceived themselves as subjects rather than objects; that is, participants viewed themselves as co-investigators rather than the object of study.
Decisions I made as the facilitator influenced the composition of the group and the tenor of our sessions, which undoubtedly informed study findings. As a foreign national and a registered nurse, my background aligned with that of fellow CPAR group members to some degree. However, in South Africa, my American passport and white skin colour conferred upon me a status not afforded to other participants, all of whom are African. It is possible that my views had an undue influence on the content and direction of our conversations and may have led me to lend more weight to data aligned with my perspective.
Evolution of CPAR group sessions
Perceptions of worthiness within the South African public health system remained the focus throughout, however the tenor of our conversations shifted over time. Prolonged interaction allowed us to reflect upon our own and others’ motives and assumptions rather than state our opinions, as might have occurred in a focus group discussion. It also enabled us to discuss sensitive topics that may not have been broached during a single interaction.
In our initial session, participants shared experiences of mistreatment they or members of their community had endured. For example, a cross-border migrant shared that sometimes clinic and hospital staff do not inform family members that their loved ones have died, ‘so the dignity of the dead is not respected’ (Activist C, Session One). Although group members continued to share personal experiences, ongoing critical reflection and engagement led our conversation to shift towards the current socio-cultural context in South Africa and its historical underpinnings. We also began to explore how perceptions of worthiness are shaped through tacit learning processes. Participants stressed that much of what health workers learn occurs outside the classroom. As a nurse explained, this type of learning ‘happens informally, in terms of people teaching and learning from each other and just chatting in the tea room’ (Nurse C, Session Two).
When we welcomed a new group member midway through the study, our attention shifted towards the legacy of apartheid and the tribal divisions that remain in its wake: ‘[W]e were born in apartheid, we grow up in apartheid, raised in apartheid, trained in apartheid. . .Black patients were attended at the black communities, so xenophobia started within our country, okay?’ (Nurse A, Session Four). Our conversations veered away from personal narrative towards consideration of the constructs, stereotypes and assumptions that bolster social and institutional hierarchies. We also began to focus more intently on potential ways to ameliorate the problems under consideration. By our final session, the conversation had progressed to critical reflection on macro issues, including health systems challenges, accountability and health policy. At participants’ request, we also began to consider potential recommendations and how they may be disseminated to key stakeholders. Dialogue continued beyond the conclusion of the study via our WhatsApp group chat and teleconferencing, resulting in the decision to share lessons learned in succinct written briefs.
The evolution of CPAR group sessions over time led our focus to shift from negative personal experiences to exploration of the assumptions, motives, and contextual factors that inform determinations of worthiness. This shift demonstrates the power of CPAR to unearth and challenge the beliefs that shape our perceptions of others. It also illustrates how critical reflection on historical and socio-cultural factors helps us understand why systems that preserve the unequal status quo are justified and maintained.
CPAR group dynamics
Group dialogue was fuelled by a desire to comprehend why clinicians, support staff and patients in South Africa behave as they do. Joint exploration of our motives and the motives of others was itself motivating, especially since conversations included both clinicians and socially marginalised people. Our dialogue gained momentum as we began to explore the historical and socio-cultural factors that give rise to unequal treatment, including rigid social and institutional hierarchies in which clinicians and support staff rank higher than patients, and patients from the general population rank higher than cross-border migrants and other socially marginalised patients.
The topics raised throughout our sessions were not easy to discuss, yet members stayed motivated despite logistical challenges and a socio-cultural context in which some participants (nurses) rank higher along social and systemic hierarchies than others (cross-border migrants). To my surprise, participants braved taxi strikes and power outages to attend sessions despite no financial incentive other than a transport allowance and a snack. Group morale remained high, and members remained optimistic, even as we examined entrenched systemic problems that seem daunting and difficult to overcome.
What led this disparate group to stay motivated for an entire year and consider each other as equals, even though critical reflection can affect participants in ‘potentially undesirable ways’ (Cooper et al., 2013: 79)? Purposive sampling likely resulted in the selection of individuals eager to share their perspectives and explore a topic in which all were invested. Participants’ desire to learn from one another and sustain a partnership is evidenced by the fact that conversation continued beyond our scheduled sessions.
That group members remained motivated and engaged affirms that recognition is central to the CPAR process. Throughout our sessions, nurses and cross-border migrants shared examples of times when they were not heard, or their efforts were unacknowledged, and when they were told, either directly or indirectly, they were not welcome. In one instance, a cross-border migrant recalled meeting with an operational manager to discuss a situation he had observed in a Primary Health Care facility: ‘I just explained what happened there and how I felt about it. She stood and was beating the table to tell me that I cannot teach her how to do’ (Activist D, Session Three). Contrary to the disconcerting anecdotes shared throughout the study, our interactions were characterised by mutual recognition. Group members ensured that everyone’s voice was heard and opinion recognised, even when we disagreed.
Reflections on the CPAR process
The research methodology described here brought people on different sides of a contentious issue together to address inequality. It provided a space for respectful conversation and an opportunity to consider the motives and perspectives of others, crucial elements that encouraged participants to remain involved. The CPAR group comprised two parties that, though both deeply invested in the topic, entered the conversation with little understanding of the other’s perspectives and motives. Participation provided an opportunity for group members to challenge our preconceived notions and reflect on others’ points of view. Prolonged interaction may have led nurses and cross-border migrants to question their assumptions about one another, especially when group members did not exhibit the stereotypical behaviour often attributed to them. As a result of our sessions, I, too, began to question my assumption that clinic staff are the sole source of patient mistreatment, an assumption that ultimately proved incorrect.
Conclusions
Critical Participatory Action Research is a collaborative method to consider challenging topics in context. Prolonged interaction between co-researchers committed to social justice and willing to engage in critical reflection is a promising means to explore sensitive issues and develop a contextualised understanding of factors that maintain inequality. The CPAR process provides an opportunity for individuals who otherwise may not engage to converse, question their assumptions, and deliberate to address an injustice. Participation provides an opportunity to challenge preconceived notions and consider the perspectives of others. It affords the time and space to reflect upon complex social problems, resulting in more nuanced and meaningful data than may be collected through traditional means.
CPAR is a prolonged dialogue, rather than a series of concrete steps. For it to succeed, researchers must be willing to collaborate and to foster an environment that promotes critical reflection and mutual recognition; one in which participants feel free to express contrary opinions, question assumptions and respectfully disagree with one another. It is also essential to acknowledge that CPAR does not necessarily result in solutions; rather, it provides an opportunity to further our understanding of a complex problem, the first step towards addressing the underlying causes of entrenched social and operational challenges such as those encountered in the South African Primary Health Care System.
