Vera Dahlqvist

Developing the Concept of Moral Sensitivity in Health Care Practice

The aim of this Swedish study was to develop the concept of moral sensitivity in health care practice. This process began with an overview of relevant theories and perspectives on ethics with a focus on moral sensitivity and related concepts, in order to generate a theoretical framework. The second step was to construct a questionnaire based on this framework by generating a list of items from the theoretical framework. Nine items were finally selected as most appropriate and consistent with the research team’s understanding of the concept of moral sensitivity. The items were worded as assumptions related to patient care. The questionnaire was distributed to two groups of health care personnel on two separate occasions and a total of 278 completed questionnaires were returned. A factor analysis identified three factors: sense of moral burden, moral strength and moral responsibility. These seem to be conceptually interrelated yet indicate that moral sensitivity may involve more dimensions than simply a cognitive capacity, particularly, feelings, sentiments, moral knowledge and skills.

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.

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.

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.

Victor and the Dragon. : A Young Child's Experiences of Discomfort and Comfort, From Diagnosis Until Death

Children with progressive cancer often suffer during treatment and at the end of their life, and they need comfort. This study’s aim was to describe a child’s experiences of being cared for until death, with a focus on discomfort and comfort. Conversations, field notes, drawings, and interviews with the child and his mother and nurse were content analyzed. The themes “enduring unbearable situations,” “expressing emotional suffering,” and “finding comfort” were constructed. The children’s parents and other family members are often a significant source of help for the children to endure discomfort and find comfort. Emotional suffering can be expressed in drawing and crying, but sometimes, a child is inconsolable and must endure discomfort. Comfort for a dying child is enhanced by having the family close, experiencing normal daily activities such as drawing and playing, and feeling at home in life despite approaching death.

Descriptions of Comfort in the Social Networks Surrounding a Dying Child

Aim: The aim of this study was to describe how comforters of one dying child were comforted, described by the childs mother and nurse. Background: The death of a child is one of the greatest losses parents can sustain and a stressful experience for nurses. Those who provide comfort may also need comfort, yet little is known about how comforters are comforted. Method: The interviews with mother and nurse were analysed using content analysis. Persons and activities mentioned as comforting were outlined in a sociogram. Findings: The findings show that the mother received comfort from her child and family, the nurse, extended family and others close to the family. She found comfort in being involved in the care and sharing worries with the nurse and in self-comfort. She described that siblings found comfort in each other, in living everyday life, in music and in expressing their feelings in drawings. The nurse gained comfort from sharing hardships with colleagues and a relative and from making a difference to the child. Conclusion: The findings provide a picture of interacting comforting social networks surrounding one dying child.