Anna Söderberg

Development and Initial Validation of the Stress of Conscience Questionnaire

Stress in health care is affected by moral factors. When people are prevented from doing ‘good’ they may feel that they have not done what they ought to or that they have erred, thus giving rise to a troubled conscience. Empirical studies show that health care personnel sometimes refer to conscience when talking about being in ethically difficult everyday care situations. This study aimed to construct and validate the Stress of Conscience Questionnaire (SCQ), a nine-item instrument for assessing stressful situations and the degree to which they trouble the conscience. The items were based on situations previously documented as causing negative stress for health care workers. Content and face validity were established by expert panels and pilot studies that selected relevant items and modified or excluded ambiguous ones. A convenience sample of 444 health care personnel indicated that the SCQ had acceptable validity and internal consistency (Cronbach’s alpha exceeded 0.83 for the overall scale). Explorative factor analysis identified and labelled two factors: ‘internal demands’ and ‘external demands and restrictions’. The findings suggest that the SCQ is a concise and practical instrument for use in various health care contexts.

Transforming Desolation into Consolation: the meaning of being in situations of ethical difficulty in intensive care

The purpose of this phenomenological-hermeneutic study was to illuminate the meaning of being in ethically difficult care situations. The participants were 20 enrolled nurses employed in six intensive care units in Sweden. The results reveal a complex human process manifested in relation to one’s inner self and the other person, which transforms desolation into consolation through becoming present to the suffering other when perceiving fragility rather than tragedy. The main point of significance here is for all health professionals to create an ethical work environment and strive for praxis that fosters ‘athomeness’, which renders us free to transform desolation into consolation. Consolation is of significance in ethics because it makes us available and helps us to fulfil the demands of life, while desolation makes us unavailable to others.

Development of the Perceptions of Conscience Questionnaire

Health care often involves ethically difficult situations that may disquiet the conscience. The purpose of this study was to develop a questionnaire for identifying various perceptions of conscience within a framework based on the literature and on explorative interviews about perceptions of conscience (Perceptions of Conscience Questionnaire). The questionnaire was tested on a sample of 444 registered nurses, enrolled nurses, nurses’ assistants and physicians. The data were analysed using principal component analysis to explore possible dimensions of perceptions of conscience. The results showed six dimensions, found also in theory and empirical health care studies. Conscience was perceived as authority, a warning signal, demanding sensitivity, an asset, a burden and depending on culture. We conclude that the Perceptions of Conscience Questionnaire is valid for assessing some perceptions of conscience relevant to health care providers.

Parents' experiences of what comforts them when their child is suffering from cancer

The aim of the study was to describe parents’ narratives concerning what they find comforting when they have a child suffering from cancer. Interviews were conducted with 9 parents—8 mothers and 1 father—of children aged 3 to 9 years who were admitted to a pediatric oncology ward and had undergone their first treatment. The findings showed that the parents derived comfort from being close to their child, perceiving the child’s strength, feeling at home in the ward, being a family and being at home, and receiving support from their social network. Comfort experienced in communion with the child and others became important and helped the parents build a new normality perceived as being at home in life despite all their difficulties. Within the frame of communion, the parents seemed to experience moments of hope for their child’s recovery and survival.

Feeling trapped and being torn: Physicians' narratives about ethical dilemmas in hemodialysis care that evoke a troubled conscience

BackgroundThis study is part of a major study about difficulties in communicating ethical problems within and among professional groups working in hemodialysis care. Describing experiences of ethically difficult situations that induce a troubled conscience may raise consciousness about ethical problems and thereby open the way to further reflection.The aim of this study was to illuminate the meanings of being in ethically difficult situations that led to the burden of a troubled conscience, as narrated by physicians working in dialysis care.MethodA phenomenological hermeneutic method was used to analyze the transcribed narrative interviews with five physicians who had varying lengths of experience in nephrology.ResultsThe analysis shows that physicians working in hemodialysis care suffered from a troubled conscience when they felt torn by conflicting demands and trapped in irresolution. They faced ethical dilemmas where they were forced to make crucial decisions about life or death, or to prioritize when squeezed between time restraints and professional and personal demands. In these ethical dilemmas the physicians avoided arousing conflicts, were afraid of using their authority, were burdened by moral responsibility and felt devalued and questioned about their way of handling the situation. The findings point to another way of encountering ethical dilemmas, being guided by their conscience. This mean sharing the agony of deciding how to act, being brave enough to bring up the crucial problem, feeling certain that better ways of acting have not been overlooked, being respected and confirmed regarding decisions made.ConclusionThe meanings of being in ethically difficult situations that led to the burden of a troubled conscience in those working in hemodialysis care, indicate the importance of increasing the level of communication within and among various professional groups - to transform being burdened by a troubled conscience into using conscience as a guide - in situations where no way of solving the problem seems to be good.

The experience of living with sensory hyperreactivity-accessibility, financial security, and social relationships.

Odor intolerance is a frequently reported problem, predominantly among women. Our purpose was to illuminate how individuals living with sensory hyperreactivity (SHR; a form of odor intolerance) experience its impact on accessibility, financial security, and social relationships. Data were collected by having 12 women with SHR write descriptive texts. These texts were analyzed with qualitative content analysis. Six themes were identified: Being limited in participating in society, being forced to behave incompatibly with ones personality, experiencing lack of understanding and respect from others, experiencing insecurity, being dependent on others, and being forced to choose between the plague and cholera.

Ethically difficult situations in hemodialysis care – Nurses' narratives:

Background: Providing nursing care for patients with end-stage renal disease entails dealing with existential issues which may sometimes lead not only to ethical problems but also conflicts within the team. A previous study shows that physicians felt irresolute, torn and unconfirmed when ethical dilemmas arose. Research question: This study, conducted in the same dialysis care unit, aimed to illuminate registered nurses’ experiences of being in ethically difficult situations that give rise to a troubled conscience. Research design: This study has a phenomenological hermeneutic approach. Participants: Narrative interviews were carried out with 10 registered nurses working in dialysis care. Ethical considerations: The study was approved by the Ethics Committee of the Faculty of Medicine, Umeå University. Results: One theme, ‘Calling for a deliberative dialogue’, and six sub-themes emerged: ‘Dealing with patients’ ambiguity’, ‘Responding to patients’ reluctance’, ‘Acting against patients’ will’, ‘Acting against one’s moral convictions’, ‘Lacking involvement with patients and relatives’ and ‘Being trapped in feelings of guilt’. Discussion: In ethically difficult situations, the registered nurses tried, but failed, to open up a dialogue with the physicians about ethical concerns and their uncertainty. They felt alone, uncertain and sometimes had to act against their conscience. Conclusion: In ethical dilemmas, personal and professional integrity is at stake. Mistrusting their own moral integrity may turn professionals from moral actors into victims of circumstances. To counteract such a risk, professionals and patients need to continuously deliberate on their feelings, views and experiences, in an atmosphere of togetherness and trust.

Nurses’ ethical reflections on caring for people with malodorous exuding ulcers

The aim of this study was to illuminate nurses’ reflections on obstacles to and possibilities for providing care as desired by people with malodorous exuding ulcers. Six nurses who took part in a previous study were interviewed. The participants were shown an illustration with findings from a study that elucidated the meaning of living with malodorous exuding ulcers. They were asked to reflect on the obstacles to and possibilities of providing the care desired by the patients. Twelve audio-recorded transcribed interviews were analysed using qualitative content analysis. Our interpretations of participants’ reflections on the obstacles and possibilities while caring for such patients revealed one theme: striving to ‘do good’ and ‘be good’. The obstacles were formulated as subthemes: experiencing clinical competence constraints, experiencing organizational constraints, experiencing ineffective communication, fearing failure, and experiencing powerlessness. The possibilities were formulated by the subthemes: spreading knowledge about ulcer treatments, considering wholeness, and creating clear channels of communication. A multiprofessional team could overcome the identified obstacles and provide structure, competencies, commitment and support to ‘do good’ for patients and ‘be good’ nurses.