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SURGICAL PERSPECTIVES

Using Social Science Theory Can Change How the Patient Experience Is Viewed in Surgical Care

Pang, Celeste MA, PhD(c)∗,†; Hallet, Julie MD, MSc†,‡,§; Chesney, Tyler R. MD, MSc‡,¶,||; Haas, Barbara MD, PhD†,‡,§,∗∗,††; Wright, Frances C. MD, Med†,‡,§; Gotlib Conn, Lesley PhD∗,†

Author Information
doi: 10.1097/SLA.0000000000005021

While qualitative methods are used in surgical research to gather patient experiences, the explicit use of interpretivist social science theory in qualitative study design remains largely absent.1 This is unfortunate, as qualitative inquiry that leverages critical social and interpretivist epistemologies (ie, ways of knowing) can offer novel insights to surgical patient experience that other paradigms may not. An interpretivist stance introduces the idea that reality is socially constructed and, by using social theories as a lens, examines how peoples’ experiences are made meaningful from different subject positions (ie, the subjective nature of reality). This is different and complementary to the positivist tradition reflected in much qualitative surgical health services research, which mainly uses theory to understand cause and effect (ie, the objective nature of reality). While theories in the positivist tradition are useful for predicting, describing, and explaining relations, theory in an interpretivist paradigm is used for contextualizing, making sense of, and uncovering the meanings associated with peoples’ lived experience.2 Each paradigm serves a different purpose in health research and these are not mutually exclusive. In this perspective, we suggest that more interpretivist, social science informed qualitative research in surgery is needed, else researcher assumptions about patient values and experiences may go unchallenged and underexplored, limiting the creation of new important knowledge to enhance patient-centered care.

To demonstrate this, we describe the study design for an ongoing qualitative study of the home care experiences of older adults’ (≥70) and their family caregivers after undergoing cancer surgery. Older adults are a surgical population known to prioritize long-term functional outcomes over more easily measurable short-term outcomes of morbidity and mortality. Long-term functional outcomes are currently not clearly defined, and often there is discrepancy between what is reported in the literature and what is important to patients.3 Our previous population-based analysis demonstrated that older adults experience more time at home after cancer resection than time in hospital.4 We therefore realized that understanding what the home care experience is like for patients and their family caregivers is key to improving the quality of patient-centered counselling and decision-making. To achieve this, we will interview patients and family caregivers to explore the outcomes of greatest significance related to their care at home. We designed our study using 2 social science theories—personhood and interdependence. These are theories commonly used in ethnography (our methodology). In Supplementary Table 1, https://links.lww.com/SLA/D223, we summarize how to use these theories in study design.

PERSONHOOD

Personhood theory is commonly used in anthropological studies of aging and care to understand how people, in a particular time and place, view themselves and others as socially valuable. Guided by conceptual questions like, “What does it mean to be recognized as a valuable person here and now?” and “How does the care here reflect or support dominant social values?,” personhood has been used to understand how and why older adults’ sense of self and self-determination may be threatened, diminished, or supported in different social and historical contexts. Anthropologist Sarah Lamb has used this theory to examine older Americans’ views of “successful aging.”5 She found their views were tied to specific sociocultural notions of individualism that emphasize independence, activity, and productivity. This research has helped to better understand the reasons why and how stigma of older age persists among older Americans, and it can help design key public health messages for reducing negative perceptions of aging, and expanding ideas of aging well.

We will use personhood theory to examine the home care experiences of older adults, viewing them as intricately connected to their immediate (eg, familial) and wider social surroundings (eg, economic, cultural). In our study design, we will purposively, and then theoretically, sample participants to reflect different subject positions regarding age, sex, socioeconomic status, ethno-cultural identity, and rurality/urban living. Our strategy is best described as critical case sampling, which allows for the selection of specific cases to explore intersecting social dimensions that shape participants’ home care experiences.6 We expect this strategy will allow us to identify the ideologies of aging and personhood at play and to situate participants’ views on valued outcomes; views that may or may not be supported by current clinical decision-making or care practices.

INTERDEPENDENCE

Interdependence theory is commonly used in feminist care ethics, medical anthropology, and critical disability studies. A main concept of interdependence is the mutuality of giving and receiving care; that is, to understand experiences of care we must move beyond a division of “caregiver” and “care receiver” to consider the relations of care that people are involved in together. Physician and anthropologist Arthur Kleinman7 has used this theory to examine his experience as caregiver to his wife who had dementia. He demonstrated how the act of caregiving involved more than doing care tasks; it was a moral practice of responsibility to, and solidarity with, his ailing spouse. He draws attention to the transformational effects of caregiving on familial relationships in the context of illness and aging.

In our study, interdependence informs our understanding of postsurgical home care as a shared experience primarily between patients and their family caregivers. Here we take the position that care is both a resource (that a person has access to or provides) and a relational practice (that people participate in together).8 In our interviews, we will examine what ideas of independence and dependence participants hold by asking, “Can you describe what independence looks like, and means, to you?,” and analytically consider participants’ feelings about home care and what they have found both helpful and frustrating. We will examine how patients and caregivers differently narrate their experiences of home care and their relationships to one another, and how their experiences are interconnected. In so doing, we recognize that as anthropologists and surgeons we hold our own assumptions about what good care and good outcomes are, and that these have the potential to influence and constrain our findings. Through continuous collaborative team discussion and iterative analysis, we will intentionally focus our efforts on exploring participants’ experiences of home care and what they articulate as their own needs.

HOW TO CHOOSE A THEORY?

It is important to identify theories that are a good fit for your research. Reading widely on a topic across disciplines can help build a robust theoretical knowledge base, in collaboration with social scientists who can offer direction and, if needed, knowledge translation. Choosing a theory to inform qualitative study design does not necessarily mean this theory will be the only one used in analysis. Theoretical lenses may expand as data are generated. Qualitative research is not intended to be theory confirming; rather, theories function as thinking tools as they are introduced into the interpretation process. We recommend exploring multiple promising theories while designing a study, starting with theories commonly used in social science research pertaining to your topic, and to continue to explore relevant theoretical literature throughout data collection and analysis. In so doing, you will be properly equipped with multiple “back pocket” theories to engage with.

DOES CHOOSING A THEORY INTRODUCE BIAS?

Articulating theory in qualitative social science research situates the study within an existing body of knowledge. Choosing a theory does not bias your study. Rather, it makes explicit the underlying assumptions informing the research. For, whether we make theory explicit or not, we each come to our research with our own unarticulated theories, or modes of understanding. In other words, whether we say so or not, we are all using theory.

For example, older adults’ independence after surgery is often measured with Activities of Daily Living (ADL) checklists, which evaluate functional recovery and independence.9 While not often described, ADL measures are founded on a set of assumptions about older adults, the aging process, and the significance of ADL tasks for defining independence.10 The extent to which these assumptions have been widely accepted have likely limited consideration of alternate views on the lived experience of older adults’ independence.10 By contrast, using a different theoretical approach such as interdependence theory, we begin by exploring what a good home care experience looks like for both older adults and their family caregivers. This approach may lead us to find that what is most highly valued by a patient is their ability to fulfil a given role in their family. Similarly, using personhood theory, we begin by asking, in the context of their home care, how older adults’ views of themselves have changed and the potential impact of this change on their relationships and wellbeing. Explicitly using different theories to explore these experiences can expand our view of what constitutes patient-centered care after surgery, and potentially enhance the delivery of more personalized treatment.

CONCLUSION

Interpretivist qualitative inquiry using social theory can benefit patient experiences and their valued outcomes. To optimize the impact of qualitative findings, theory should be made explicit to move beyond mere descriptive data toward understanding how patient experience is socially produced. Theoretical approaches can and should be described in journal articles, taking advantage of boxes and footnotes to explicate key concepts where word count is limited. Ultimately, social theory is a tool to support a more patient-centered approach to care, conceptualizing the whole person in a social and cultural time and place, and guiding tailored interventions to optimize desired care therein.

REFERENCES

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