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Scand J Caring Sci; 2013; 27; 203-211 Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care Introduction: Providing palliative care for people with diabetes at the end of life is part of the chronic disease care trajectory, but end of life care is complex and the presence of diabetes further complicates management. Aim: The aim of the paper is to discuss the ethical and methodological issues encountered when undertaking research to develop guidelines for managing diabetes at the end of life and the strategies used to address the issues. Method: The issues emerged as we developed guidelines for managing diabetes at the end of life, which included conducting individual interviews with 14 people with diabetes requiring palliative care and 10 family members. A reflexive researcher journal was maintained throughout the guideline development process. The interview transcripts and researcher's journal were analysed to determine key methodological, ethical and researcher-related issues. Findings: Key themes were vulnerability of the sampling population, methodological issues included recruiting participants and ensuring rigor, ethical issues concerned benefit and risk, justice, autonomy, privacy, professional boundaries and informed consent. Researcher-related issues were identified such as managing participant distress and their own emotional distress. People were willing to discuss end of life diabetes management preferences. Conclusions: Undertaking research with people at the end of life is complex because of their vulnerability and the ethical issues involved. However, the ethical principles of autonomy and justice apply and people should be given the relevant information and opportunity to decide whether to participate or not. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2010; 24; 38-45 The objectives of this article are to present a measurement instrument for virtues, and to examine the link between virtues and health. The instrument was tested by the occupational health care at a large Finnish pulp and paper manufacturer and was shown to be consistent, valid and reliable. In developing the scale, we had two samples of employees and used factor analysis and partial least squares modelling (PLS) on both samples. Factor analysis showed that pride is the most important virtue, followed by love and generosity. In the PLS analysis, we found virtues to significantly reduce the number of sick days. In addition, we found significant relationships between virtues and fatigue, depression and happiness. Virtuous behaviour decreased sick leave and depression. The virtues had a positive influence on happiness and on improvement in one's health. The results show that by taking into account virtues in working life, companies can significantly improve their employees' well-being. The measurement instrument helps broaden the traditional view on health and is meant to be used by health care professionals in their daily practice. By addressing a person's physical, mental and virtual well-being, health care practitioners can take care of employees on a broader level than before. [ABSTRACT FROM AUTHOR]

Background: Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care. Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn. Aim: The aim of this study was to explore next of kin's views of dignity in home healthcare services. Methods: This study has a qualitative approach and content analysis was applied. The purposeful sample consisted of next of kin to patients who received services from home healthcare or in nursing homes (n = 11). One focus group was conducted in 2016. Results: Five themes emerged from the data analysis concerning struggling for a dignifying care in home healthcare services: Indignity implies double vulnerability, desire for respect and recognition, experiencing responsibility for a dignifying life, undignifying care due to lack of competence, and the home as a common sanctuary is gradually lost. Conclusions: This study highlights the importance of ensuring dignity in care for patients living at home. Next of kin should be seen as a partner with the need for recognition and support. Maintaining human dignity for loved ones requires competence, respect and recognition. [ABSTRACT FROM AUTHOR]

Background: Researchers are obligated to do no harm to participants of research. Conflicts in relationships can cause negative well‐being; therefore, insight is needed into the particular ethical considerations that arise when conducting joint interviews with close relatives or family members simultaneously in the healthcare setting. Aim: To collect and share knowledge related to ethical considerations conducting joint interviews. Design and methods: A literature review inspired by the integrative review method was performed. Data were retrieved through a structured search in PubMed, CINAHL and the Philosopher's Index and Academic Search Premier for articles published in English from 1980 to 2016 and included 18 articles, of a possible 2153. Article content was assessed line‐by‐line, and ethical considerations were extracted and organized in three subgroups regarding: Planning joint interviews; Conduction joint interviews and Reporting on joint interviews Findings: Participants should be offered the best terms for a constructive, on‐going relationship after the joint interview has ended. This obligates the researcher to ensure a safe environment during the joint interview and create a delicate balance between the needs of the participants, using nonconfrontational techniques that foster equal and neutral but dedicated attention to all parties, before, during and after the joint interviews. Conclusion: Specific ethical considerations should be taken into account before, during and after joint interviewing. Further research is needed before a final conclusion can be drawn. [ABSTRACT FROM AUTHOR]

Changes in the scope of health research in the last 50 years require evidence to support assumptions about what constitutes harm and benefit to research participants. The aim of this study was to investigate the actual benefits and harm individuals experienced while participating in potentially distressing qualitative research. Data were collected via semi-structured interviews and subjected to thematic analysis. Five themes emerged: (i) motivation to participate, (ii) expectations of participation, (iii) sources of harm, (iv) mitigating harm and (v) benefits of participation. Results indicated that all participants benefited through participation in the qualitative research. Most participants also reported varying degrees of distress during the interviews, but did not consider this harmful. In contrast, dissemination of the findings did constitute an unexpected source of potential harm for the participants and researcher. It is concluded that for these participants, distress during qualitative interviewing is not in itself harmful, and that participant information sheets need to reflect the harms and benefits of participation more accurately in a user-friendly format. Furthermore, the sensitivity with which research is disseminated needs to be considered as a fundamental protection for participants from unwarranted criticism by third parties. Recommendations include that researchers conducting interviews have specific personal and professional attributes relevant to the participant group, and that transcripts/raw data should not be sent automatically to participants. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2010; 24; 533–540 Clinical prioritizations and contextual constraints in nursing homes - a qualitative study Aim: The aim of the study was to describe nurses’ and physicians’ experiences of prioritization factors in nursing homes. Background: What are the experiences of health care personnel when prioritizing treatment and care for elderly residents in nursing homes? Little research has been done in this area, yet with the growing elderly population and limited health care budgets there can be little doubt about its relevance. Method: The study was conducted through semi-structured interviews with 13 physicians and nurses in six nursing homes. The interviews were analysed by manifest content analysis based on first- and second-level categories describing relevant factors. The categories were developed after preliminary readings of the texts. Results: This study revealed that there was a complex set of contextual constraints which influenced the care provided. There were three main findings: (i) some overall challenges related to providing good care to nursing home residents; these in turn influenced (ii) prioritizing dilemmas and (iii) factors influencing prioritization decisions. Discussion: Contextual constraints and higher level prioritizations seem to play a key role in clinical prioritizations in nursing homes. The combination of implicit rationing and the factors described as most predominant in the clinical prioritizations in nursing homes may result in inadequate and unjust health care services for some of the nursing home residents. In particular, those patients who do not speak up or do have comprehensive needs are at risk of being neglected. [ABSTRACT FROM AUTHOR]