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  • 1.
    Berglund, Britta
    et al.
    Karolinska University Hospital, Nursing Division, Department of Medical and Surgical Gastroenterology.
    Mattiasson, Anne-Cathrine
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för sjuksköterskeutbildning.
    Randers, Ingrid
    Sophiahemmet University College.
    Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from EhlersDanlos syndrome2010Inngår i: Disability and Rehabilitation, ISSN 0963-8288, Vol. 32, nr 1, s. 1-7Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care.

    PURPOSE: To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences.

    METHOD: A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective.

    RESULTS: After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'.

    CONCLUSIONS: The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.

  • 2.
    Nymark, Carolin
    et al.
    Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital.
    Mattiasson, Anne-Cathrine
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för sjuksköterskeutbildning.
    Henriksson, Peter
    Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital.
    Kiessling, Anna
    Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital.
    The turning point: from self-regulative illness behaviour to care-seeking in patients with an acute myocardial infarction.2009Inngår i: Journal of clinical nursing, ISSN 1365-2702, Vol. 18, nr 23, s. 3358-3365Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aims and objectives. To describe the care-seeking process from interpretation of an initial symptom to the decision to seek medical care in patients with an acute myocardial infarction. Background. Patients afflicted by symptoms of an acute myocardial infarction delay in seeking care far exceeding the desired time limits. This results in avoidable loss of life. There is thus a need to understand these patients' initial discomfort, appraisal and behaviour to design interventions that could reduce delay in care-seeking. Design. Focus group discussions with patients who had had a recent acute myocardial infarction. Methods. The analysis of the transcribed text was inspired by the self-regulatory model of illness behaviour. Results. Patients with acute myocardial infarction describe problems to identify the exact time of onset of often vague symptoms. Their experiences of symptoms did not match their expectations. These patients exhibit self-regulatory illness behaviour that seems to cause a considerable delay in care-seeking. Conclusions. We found indications of a pertinent shift in appraisal and coping-strategy when a patient changes from self-regulative illness behaviour to seeking care - the turning point. This shift seems to be affected by several partly contradictory influences and it takes a considerable time for a person to reach this stage. All aspects of the patients' self-regulative illness behaviour have to be considered if we want patients to seek medical care more rapidly. Relevance to clinical practice. Our findings are important to consider in future design of public health and rehabilitation strategies to save patient lives. To identify the turning point is a profitable way to deepen the understanding of patient behaviour during the initial phase of an acute myocardial infarction.

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