Editorial

In her final editorial for Qualitative Research in Medicine and Healthcare, Mariaelena Bartesaghi described how her health condition prevented her from continuing as Editor-in-Chief. Dr. Bartesaghi described herself as a character in the type of stories that we research and report about in this very journal. Like so many people whose stories have been told and reflected upon in QRMH since Dr. Bartesaghi founded the journal in 2017, her story “is one about the burdens of being a patient as well as a human being who suffers” (p. vi). [...]

Assessing collaboration among team scientists within a triadic research center partnership

Few studies have utilized qualitative methods to assess the perceived effectiveness of collaboration among research center interdisciplinary team scientists. Stages of team development served as the theoretical framework to characterize minority serving institution (MSI) and predominantly White institutions (PWI) participants’ challenges and successes during a National Institutes of Health (NIH) sponsored cancer health disparities training and research program. We present the finding of an inductive analysis of four open-ended survey questions across two years. Fostering an awareness of the inherently taxing, yet centrality of group (team) development may advance an understanding of team dynamics and lead to increased team cohesion and productivity. In conclusion, we provide recommendations to assist multiple principal investigators who embark on team development.

The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study

Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL.

Parents living with a child afflicted by a life-limiting medical condition: Typology of their narrative identity

Parents of children suffering from a life-limiting medical condition struggle with difficult existential questions. Our objective was to understand why those parents’ interactions with the medical world were so different, ranging from hostile to collaborative, with the themes of identity, spirituality and serenity. A grounded theory design based on the narrative identity framework was used to interview sixteen parents. Three categories emerged: i) Parents in the Almighty category delegate all their power to God or medicine and are the most suffering parents as they do not author their life; ii) Parents in the Me category make every decision on their own causing much anxiety, and they become rebarbative to the medical world; iii) Parents in the Guide category take advice from others, while remaining the authors of their stories and are the most serene parents. Understanding and recognizing these categories can have a major impact on communication with those families.

The ruling relations of patient involvement in cardiac rehabilitation programs

Patient involvement has often been defined and examined on the basis of conceptual theoretical frameworks. This article explores patient involvement contextually and locally, in encounters between patients and healthcare professionals in cardiac rehabilitation in Denmark. With inspiration from institutional ethnography, the goal is to unpack what involvement actually implies in rehabilitation activities. The analysis provides micro-sociological insights into how patient involvement is constituted and institutionally conditioned and shows how textually mediated ruling relations regulate activities and interactions, shaping patient involvement in local practices. The analysis reveals how patient involvement primarily relates to healthcare professionals involving patients in health knowledge. It explores how national guidelines and local instructions for healthcare professionals frame understandings of patient needs and problems. The concluding discussion highlights how patients have limited opportunities to influence their own care process. It also points out how it is left to the individual healthcare professional to solve contradictions between institutionally defined tasks and the ambition of patient involvement.

From nurse to patient: A journey to healing

The nurse manager of an oncology clinic in a major cancer center shares his personal experience as a COVID-19 patient with other health care workers. He has spent two weeks in intensive care and found himself on the brink of death. In a lively description, he underlines the aspect of care that contributed to his cure. This included the respect that his caregivers expressed to his values, his love of his family and his religious beliefs. The communication of the caregivers was always honest and compassionate. He learned that love is the strongest motivation to survive in the course of a life-threatening disease and that healing is possible even in the absence of cure.

COVID-19 pandemic causing medical and public health ethical dilemmas: A case report and review of literature

The COVID-19 pandemic presented myriad of unprecedented and daunting ethical dilemmas to healthcare workers, patients, their families, and the public health. Here we present a case of a 42-years-old Hispanic female with underlying hematological malignancy that developed severe SARS-COV-2 infection amidst the pandemic. This case illustrates some remarkable ethical dilemmas during pandemic times, including the lack of advanced directive planning, the repercussions of restricting family visits, and what ethics in crisis and moral injury entails. Identifying the ethical challenges emerging from the pandemic will assist physicians and other providers in making proper decisions and maintaining the best standard of care.

COVID-19: A learning moment for patients and health professionals

A hospital physician from Northern Italy describes his own experience as caregiver of COVID-19 patients and as a patient himself who required treatment in urgent care. From this experience he learned that an untapped reserve of human solidarity exists in a team of caregivers in the midst of a crisis where they find an unsuspected shared energy. He never would have believed to be able to work long hours patiently and without sleep until he was challenged by the demands of the COVID crisis. As such, he discovers that to be effective the team leader should lead by example rather than by commandments! His experience as a patient allowed him to face his own mortality, to learn that healing rather than cure is the ultimate goal of caregiving.

Editor’s introduction: Qualitative research in the course of a pandemic

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Editor’s introduction. Qualitative Research in Medicine and Healthcare: The (politics of) the illness experience

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