Researching lived experience in health care: Significance for care ethics

Abstract

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical principles are differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field.

Why shared decision making is not good enough: lessons from patients

“…In the first place, our analysis underlines the importance of understanding the messiness of lived experiences of people who have to deal with serious illness and supports the growing attention for research with qualitative methods to explore how individuals experience illness in real-life contexts 11 12. In accordance with this, Dresser7 8 argues for a first-person bioethics that better appreciates the existential, psychological and social context of illness.…”

Discharge‐planning for long‐term care needs: the values and priorities of older people, their younger relatives and health professionals

“…Recent dementia research (29) suggests that for family decision‐makers, beneficence supplants autonomy over time, consistent with our finding that support for autonomy was often conditional. Further development of a transitional theory or model of ethics for discharge‐planning may utilise an ‘ethics of care’ philosophical approach: this acknowledges both individuality and connectedness (52, 53), while informing and being informed by qualitative research (54).…”

Interviewing with or without the partner present? – an underexposed dilemma between ethics and methodology in nursing research

“…Ethics of care considers the particular needs of a particular individual in a particular situation (Dierckx de Casterlé et al . , Nordhaug & Nortvedt ) and refers to caregivers' sensitivity, responsiveness, clinical wisdom and moral competence (Tronto , Nordhaug & Nortvedt , ). It could be that Hall in case A, being a woman and a grandmother herself, was more sensitive and responsive to the grandmother than to the grandfather during the interview, thus leaving the grandfather's experiences unspoken.…”