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  • 1.
    Lilja Andersson, Petra
    et al.
    Lunds universitet.
    Edberg, Anna-Karin
    Kristianstad University, School of Health and Society. Kristianstad University, Research Platform for Collaboration for Health.
    Ethical aspects of undergoing a predictive testing for Huntington's disease2014Conference paper (Refereed)
  • 2.
    Lilja Andersson, Petra
    et al.
    Lund University.
    Petersén, Åsa
    Lund University.
    Graff, Caroline
    Karolinska Institutet, Stockholm.
    Edberg, Anna-Karin
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap II. Kristianstad University, Research Platform for Collaboration for Health.
    Ethical aspects of a predictive test for Huntington’s Disease: a long term perspective2016In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 23, no 5, p. 565-575Article in journal (Refereed)
    Abstract [en]

    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.

  • 3.
    Malmgren, William
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap.
    Parfalk, Simon
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap.
    Att som smärtpatient möta sjukvårdspersonal2014Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [en]

    Pain is the discomfort that the individual is experiencing to be outside the level of pain that he or she is experiencing as tolerable. The pain is usually referred to as either chronic or acute. Acute pain is termed as short-lived transient, it becomes a chronic pain when it lasts past three months. The pain arises out of a direct or indirect damage that is registered out of nociceptive pain receptors. In cases where the pain's origin is unknown is referred to as idiopathic pain. The pain causes in addition to emotional suffering also an impact on the individual's physical and social interactions, and untreated pain can result to medical complications. The meeting is a unique nursing interaction where the parties' understanding and trust for each other affects how patients experience their pain. This effect leads to an increased or reduced suffering for the unique individual. The purpose of this study was to describe how people with pain experience meeting with the nurse. The method was a literature review with systematic searches where medical care databases were searched. The result is based on fourteen qualitative articles. Three main categories and nine subcategories emerged after the analysis. The result includes how the patient experiences the nurse managing the pain. The conclusion is made that it is required by health care professionals to meet the needs of the patient and to see him as unique. Pain treatment must be tailored to the individual needs more in order to ensure that care is of high quality. Which includes an area in which improvements can always be made.

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