Charlotte Benoot

An Auto-Ethnographic Study of the Disembodied Experience of a Novice Researcher Doing Qualitative Cancer Research

Qualitative health researchers who explore individuals’ experiences of illness are exposed to an emotionally demanding work environment. After doing 49 interviews with cancer patients living alone, I was confronted with serious emotional distress that kept me from my work for almost 6 months. Because there is a need for discussion within academia about the emotional risks encountered by researchers, I used auto-ethnography to explore what I call the “three disembodied experiences” I encountered during the research: disembodiment linked with suppression of emotions, disembodiment linked with distal traumatization, and disembodiment linked with overidentification with the participant. I illustrate these concepts with personal stories of doing research with cancer patients living alone. I conclude that writing down experiences of doing qualitative research in an embodied and reflexive way holds two advantages: It can protect the researcher and enhance the quality of research.

The use of purposeful sampling in a qualitative evidence synthesis: A worked example on sexual adjustment to a cancer trajectory.

BackgroundAn increasing number of qualitative evidence syntheses papers are found in health care literature. Many of these syntheses use a strictly exhaustive search strategy to collect articles, mirroring the standard template developed by major review organizations such as the Cochrane and Campbell Collaboration. The hegemonic idea behind it is that non-comprehensive samples in systematic reviews may introduce selection bias. However, exhaustive sampling in a qualitative evidence synthesis has been questioned, and a more purposeful way of sampling papers has been proposed as an alternative, although there is a lack of transparency on how these purposeful sampling strategies might be applied to a qualitative evidence synthesis. We discuss in our paper why and how we used purposeful sampling in a qualitative evidence synthesis about ‘sexual adjustment to a cancer trajectory’, by giving a worked example.MethodsWe have chosen a mixed purposeful sampling, combining three different strategies that we considered the most consistent with our research purpose: intensity sampling, maximum variation sampling and confirming/disconfirming case sampling.ResultsThe concept of purposeful sampling on the meta-level could not readily been borrowed from the logic applied in basic research projects. It also demands a considerable amount of flexibility, and is labour-intensive, which goes against the argument of many authors that using purposeful sampling provides a pragmatic solution or a short cut for researchers, compared with exhaustive sampling.Opportunities of purposeful sampling were the possible inclusion of new perspectives to the line-of-argument and the enhancement of the theoretical diversity of the papers being included, which could make the results more conceptually aligned with the synthesis purpose.ConclusionsThis paper helps researchers to make decisions related to purposeful sampling in a more systematic and transparent way. Future research could confirm or disconfirm the hypothesis of conceptual enhancement by comparing the findings of a purposefully sampled qualitative evidence synthesis with those drawing on an exhaustive sample of the literature.

The Sexual Adjustment Process of Cancer Patients and Their Partners: A Qualitative Evidence Synthesis

When confronted with cancer, a prominent challenge for patients and their partners is their changed sexual relationship. An empirically based theoretical model of the sexual adaptation process during cancer might be helpful in guiding the development of adequate interventions for couples who struggle with their sexual relationship. Therefore, the purpose of this study was to synthesize evidence from primary qualitative research studies and to arrive at a detailed description of the process of sexual adjustment during cancer. We conducted a qualitative evidence synthesis of a purposeful sample of 16 qualitative papers, using the meta-ethnography approach to synthesis. We found that the subsequent studies used different theoretical approaches to describe the sexual adaptation process. This led to three divergent sexual adaptation processes: (1) the pathway of grief and mourning, depicting sexual changes as a loss; (2) the pathway of restructuring, depicting the adjustment process toward sexual changes as a cognitive process with a strong focus on the social and cultural forces that shape the values and experiences of sexuality; and (3) the pathway of sexual rehabilitation, depicting sexual changes as a bodily dysfunction that needs treatment and specific behavioral strategies. All three pathways have their own opportunities and challenges. A greater awareness of these different pathways could help healthcare providers to better understand the ways a particular couple might cope with changed sexuality, offering them opportunities to discover alternative pathways for sexual adjustment.

Informal support needs of cancer patients who are living alone: a qualitative insight.

Staying independent is an important need for cancer patients living alone. Such patients might have specific informal support needs in order to stay independent. We want to explore which informal support patients living alone perceive as helpful along the cancer care continuum.

Acting Independently While Living Alone: The Strategies and Struggles of Cancer Patients

Cancer patients who live alone place specific importance on acting independently during treatment. We want to describe what it means to act independently and which strategies patients use to continue to act independently. We used a qualitative design, based on grounded theory. We interviewed 32 patients, 17 of them a second time. Patients who live alone defined acting independently in two different ways: It meant not only doing things alone but also using the help of others in a controlled way. These two meanings lead to two types of strategies. As treatment evolves, patients needed to change their preferred type of strategies to continue acting independently. Succeeding to change led to a feeling of mastery and success. However, failing to change led to struggling, whereby patients’ needs became invisible. Health care providers should anticipate patients’ inability to change strategies during cancer treatment, thereby preventing the patient’s struggle from only becoming visible during crisis.