Ethical aspects of a predictive test for Huntington's Disease: A long term perspective.

BACKGROUND: A predictive genetic test for Huntington's disease can be used before any symptoms are apparent, but there is only sparse knowledge about the long-term consequences of a positive test result. Such knowledge is important in order to gain a deeper understanding of families' experiences. OBJECTIVES: The aim of the study was to describe a young couple's long-term experiences and the consequences of a predictive test for Huntington's disease. RESEARCH DESIGN: A descriptive case study design was used with a longitudinal narrative life history approach. PARTICIPANTS AND RESEARCH CONTEXT: The study was based on 18 interviews with a young couple, covering a period of 2.5 years; starting 6 months after the disclosure of the test results showing the woman to be a carrier of the gene causing Huntington's disease. ETHICAL CONSIDERATIONS: Even though the study was extremely sensitive, where potential harm constantly had to be balanced against the benefits, the couple had a strong wish to contribute to increased knowledge about people in their situation. The study was approved by the ethics committee. FINDINGS: The results show that the long-term consequences were devastating for the family. This 3-year period was characterized by anxiety, repeated suicide attempts, financial difficulties and eventually divorce. DISCUSSION: By offering a predictive test, the healthcare system has an ethical and moral responsibility. Once the test result is disclosed, the individual and the family cannot live without the knowledge it brings. Support is needed in a long-term perspective and should involve counselling concerning the families' everyday life involving important decision-making, reorientation towards a new outlook of the future and the meaning of life. CONCLUSION: As health professionals, our ethical and moral responsibility thus embraces not only the phase in direct connection to the actual genetic test but also a commitment to provide support to help the family deal with the long-term consequences of the test.

The use of drama to support reflection and understanding of the residents' situation in dementia care: a pilot study.

BACKGROUND: One key aspect of person-centredness is striving to understand both the patients' experiences and behaviours from their perspective. These aspects are precisely those that staff in dementia care highlight as causing them most difficulty because the people in their care have major problems expressing themselves. There is thus a need to develop a method to help the staff to achieve interpretation through reflection. AIM: The aim of this study was to explore the use of drama as a tool to support reflection among staff working in the residential care of people with dementia. DESIGN: A qualitative evaluation of a programme consisting of three drama sessions with staff working in residential care (n = 10 nurse assistants). METHODS: Data comprised observations and tape recordings of the sessions, the researchers' reflections after each session and a focus-group interview with the participants. The texts were analysed using qualitative content analysis. RESULTS: The analysis showed that: (i) the exercises stimulate reflection about daily caring practice; (ii) the participants must receive extensive information about the purpose of the sessions; (iii) the research team must secure the defined frames and conditions and have practical knowledge about caring for people with dementia and (iv) the management needs to be stable, committed and supportive. CONCLUSION: Drama seems to be a valid tool to aid reflection, but several adjustments are needed concerning both the content of the sessions and the methodology. When designing a larger intervention study, it would be preferable to the sessions to be combined with staff support to effect changes in care provision resulting from their increased awareness of the residents' situation and experience. IMPLICATIONS FOR PRACTICE: Our results showed that drama can be a means to enhance reflection among staff in residential care for people with dementia. Further research is however needed concerning the effects for the staff's situation and nursing care quality.

Ethical aspects of undergoing a predictive genetic testing for Huntington's disease.

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington's disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation.

Swedish nursing students' experience of aspects important for their learning process and their ability to handle the complexity of the nursing degree program.

The aim of the study was to explore nursing students' experiences of aspects important for their learning process and their ability to handle the complexity of the nursing degree program. The study was longitudinal and qualitative based on interviews with nursing students, six women and two men aged 20-36, during their three years of education. In all, seven patterns were found embracing aspects of importance for the students' learning: Having a clear goal, being able to re-evaluate one's ideas, being acknowledged, when the abstract becomes tangible, using one's own experiences as a tool for learning, hovering between closeness and distance regarding one's future profession and handling theory and practice in relation to one another. The results show the importance of providing clinical courses, strongly connected to the theoretical parts of the program and to use reflection and experience-based learning in the nursing program.

The transition from rookie to genuine nurse: narratives from Swedish nurses 1 year after graduation.

This article describes nurses' experiences during their first year after graduation, based on the qualitative content analysis of eight interviews. The results show that the nurses experienced a transition from "being a rookie," including being accepted as a member of the team and respected as a colleague, to "becoming a genuine nurse," including the feeling of being able to shoulder responsibility, prioritize tasks, and convey confidence to patients. This transition seems to occur regardless of support, and it is important to be aware of nurses' level of maturity and to adjust the degree of responsibility given to them because they may not be comfortable revealing their limitations to others.

The nursing programme in the rear-view mirror. Interviews with Swedish nurses one year after their graduation.

In order to increase the understanding of how students assimilate the knowledge they need to carry out their professional duties, knowledge about the experience of the nursing education in the light of the first year of employment is important. The aim of this study was to describe nurses' views of their education, one year after their graduation. Interviews with eight nurses, aged 24 to 40 years, were analysed using manifest qualitative content analysis. The results show that, when viewing their education in the rear-view mirror, they emphasised the importance of the applied courses but had started to acknowledge the importance of training in scientific methods, which during their education was seen as less important. They also stated that their training in medical science had been sufficient, although during their education they expressed doubts about whether this level of knowledge would be enough. The nurses also realised that knowledge concerning the subject of nursing science afforded them both opportunities and the potential possibilities to influence nursing care provision. The study indicates that nursing education gives the students the tools they need to perform their assignments as registered nurses, even if clinical experience is required to internalise and consolidate the knowledge.