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  • 51.
    Berterö, Carina
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Grundström, Hanna
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Norrköping.
    The double-edged experience of healthcare encounters among women with endometriosis: a qualitative study2017In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 1-2, p. 205-211Article in journal (Refereed)
    Abstract [en]

    Aims and objectives

    To identify and describe the experience of healthcare encounters among women with endometriosis.

    Background

    Endometriosis is a “hidden” chronic gynaecological disease appearing in every 10th woman of fertile age. Different manifestations of pain are the main symptoms, often leading to impaired physical and mental health, and lower quality of life. Previous research on healthcare experiences among women with endometriosis has focused on diagnostic delay and experiences of encountering general practitioners.

    Design

    A qualitative, interpretive, phenomenological approach was used.

    Methods

    We interviewed nine women aged 23–55, with a laparoscopy-confirmed diagnosis of endometriosis. The interviews were recorded and transcribed verbatim. The data were analysed following the steps of the interpretive phenomenological approach.

    Results

    Two themes were identified in the interview transcripts: being treated with ignorance and being acknowledged. The essence: “the double-edged experience of healthcare encounters” emerged from the themes. The women's experience was double-edged as it involved contradictory feelings: the encounters were experienced as both destructive or constructive. On the one hand, the destructive side was characterised by ignorance, exposure and disbelief. On the other hand, the constructive side made the women feel acknowledged and confirmed, boosting their self-esteem.

    Conclusions

    The new and important aspects of the findings are that the experience of healthcare encounters is for the first time expressed as double-edged: both destructive and constructive. The experience was of specific importance as it affected the women's perceptions of themselves and of their bodies.

    Relevance to clinical practice

    The information about the constructive side of the experience is of clinical valuable for all healthcare professionals (nurses, midwives and doctors) encountering these women, as it provides a new level of understanding of the experiences. The findings demonstrate both psychological and practical aspects that can help professionals to improve the encounters.

  • 52.
    Berterö, Carina
    et al.
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Hjelm, Katarina
    Institutionen för hälso och vårdvetenskap, Linnéuniversitetet Växjö, Växjö, Sverige.
    Social support as described by foreign-born persons diagnosed with type 2 diabetes mellitus and living in Sweden.2010In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 12, no 4, p. 507-514Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore and describe the meaning of support and its impact on the life situation of foreign-born persons diagnosed with type 2 diabetes mellitus and living in Sweden in relation to gender, age, and the duration of the disease. Mixed methods were used on a purposive sample of 34 foreign-born adults who had been diagnosed with type 2 diabetes mellitus. Qualitative data were collected by semi-structured interviews and quantitative data were collected by the Norbeck Social Support Questionnaire (NSSQ). The meaning of “support” was described by the participants as medical support, information support, and aiding support to learn to manage diabetes. Support influenced the participants' entire life and their need for it was related to the severity of the diabetes and differences regarding age and gender. The participants scored low on the NSSQ regarding total emotional support, total aid, and total function and 42% had lost an important relationship during the last year. Their marital status had no impact on emotional support but aid was significant. Medical support, with regular follow-up and information, is important in obtaining affirmation and aids in learning to manage diabetes mellitus.

  • 53.
    Berterö, Carina
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Johansson, G.
    Univ. College of Health Sciences, Jönköping, Sweden.
    Compliance with hormone replacement therapy among Swedish women2001In: International Nursing Review, ISSN 0020-8132, E-ISSN 1466-7657, Vol. 48, no 4, p. 224-232Article in journal (Refereed)
    Abstract [en]

    By means of a simple postal questionnaire, all women registered as hormone therapy patients (n = 241) at a gynaecological clinic were screened for reasons for receiving hormone therapy. They were also screened for their compliance in following the midwife's advice and information, as well as the gynaecologist's prescriptions. The majority of the women participating in this study contacted the clinic for climacteric symptoms. The time duration for using hormone therapy ranged from 1 month to 6 years. Those using a plaster or gel were asked why they should take progesterone pills. Forty per cent gave erroneous answers or did not know. Of these, 62% reported that they understood the oral information, whereas 60% reported that they understood the written information. Fifty-three per cent of the women stated that they would stop their hormone therapy if they did not feel well or increased in weight. New discoveries or information about benefits or risks were given by 22% as reasons affecting their decision. Compliance demands well-motivated and well-informed patients. The implication of the study result for practice is that there must be dialogue between the women and their midwife/ gynaecologist. It is important that the women feel they are receiving treatment which they have given their consent to, and that they feel and know that they are performing self-care. Midwives have recurrent contact with women during their life and have already established a relationship with them, which facilitates an individualized communication.

  • 54.
    Berterö, Carina
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Kapborg, I
    n/a.
    Swedish beginner student nurses' image of caring2001Conference paper (Refereed)
  • 55.
    Berterö, Carina
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Vanhanen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science. Östergötlands Läns Landsting, Heart Centre, Department of Thoracic and Vascular Surgery.
    Appelin, Gunilla
    Högskolan Jönköping.
    Receiving a diagnosis of inoperable lung cancer: Patients' perspectives of how it affects their life situation and quality of life2008In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 47, no 5, p. 862-869Article in journal (Refereed)
    Abstract [en]

    Lung cancer is a disease with many biomedical and psychological symptoms. The diagnosis and treatment of lung cancer induces adverse effects. Having an inoperable lung cancer there are few possibilities of being cured. Management of patients with inoperable disease is directed at relieving local or systemic symptoms. The purpose of this study is to describe how it affects the patients' life situation and quality of life. Data was collected by qualitative interviews where the patient's lived experiences were articulated. Twenty-three Swedish patients diagnosed and starting palliative treatment for inoperable lung cancer were interviewed. The interviews were audio-taped and transcribed verbatim. Data were interpreted trough interpretive phenomenology. Six themes were identified that were important for the informants' experience of their life situation and quality of life. The themes were: Experience of uncertainty, including time of waiting and thoughts, experience of hope, about a prolonged life, network as support, being treated as the person they are thoughts of death, is there time to conclude their lives?, feelings of shame and guilt, they have caused the disease by themselves and next of kin reactions, sadness, guilt, worries and anger. These six themes gave a structure presenting the essence: Living as usual. Maintaining independency and integrity were important, as well as maintaining status, being treated as the person they always had been and that they experience that they had a meaning to fulfill in life. They were living as usual. The findings of this study point out the importance of improving the care of people afflicted with lung cancer, as well as promoting support for the next of kin, since they are significantly important for these patients' experiences of quality of life. This knowledge and understanding will be useful for development of interventions and guidelines for treatment. © 2008 Taylor & Francis.

  • 56.
    Berterö, Carina
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Wilmoth, Margaret C
    n/a.
    Breast Cancer and it's treatment affecting women's Self: A Meta-Synthesis of the Qualitative Literature 1990-2003.2006Conference paper (Refereed)
  • 57.
    Berterö, Carina
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Wilmoth, Margaret C
    n/a.
    Breast cancer and its treatment affecting women's 'Self'. A Metha-Synthesis of the Qualitative Literature 1990-20032005Conference paper (Refereed)
  • 58.
    Björkander, Janne
    et al.
    Internmedicin, Ryhovs Länssjukhus.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Does Advoy.com TM help patients with primary immunodeficiency diseases; experience that their life situation has improved?2010In: RECIIS Electronic Journal of Communication Information & Innovation in Health, ISSN 1981-6286, Vol. 4, no 2, p. 3-8Article in journal (Refereed)
  • 59.
    Brobäck, Gunilla
    et al.
    Avd för omvårdnad Hälsohögskolan, Jönköping.
    Berterö, Carina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Care, Nursing Science.
    How next of kin experience palliative care of relatives at home2003In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 12, no 4, p. 339-346Article in journal (Refereed)
    Abstract [en]

    Primary health care teams are the teams responsible nowadays in Sweden for the greater part of the home health care system, providing palliative care in the patient's home. If palliative care in the home is to be ethically defensible, it should be voluntary from the point of view of the next of kin and should be designed in such a way that he or she receives different forms of support during the care period. The purpose of this paper is to explore the meaning of palliative care in the home as experienced by the next of kin. The data consist of transcripts from interviews with the next of kin. Giorgi's phenomenological method was selected as the method/analysis for this study, because it focuses on uncovering the meaning of experiences of the participants by studying descriptions from their perspective. A feeling of insufficiency is the phenomenon, which permeates all the five themes: adjustment, awareness, being perceived as a person, emotional effects and feelings of uncertainty. Because the informal carer/next of kin is a significant contributor to palliative care in the home, it is important to promote feelings of control and also self-efficacy.

  • 60.
    Börjeson, Sussanne
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Arweström, Carina
    Länssjukhuset i Kalmar.
    Baker, Angelica
    Länssjukhuset i Värnamo.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Nurses' experiences in the relief of postoperative nausea and vomiting2010In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 19, no 13-14, p. 1865-1872Article in journal (Refereed)
    Abstract [en]

    Aim. The aim of the study was to illuminate the experience of nurses in relieving postoperative nausea and vomiting.

    Background. Postoperative nausea and vomiting has been shown to be one of the most common and distressing side effects of surgery. In spite of this, there has been little research on the role of nurses in caring for patients with postoperative nausea and vomiting.

    Design. Qualitative approach using narratives.

    Methods. Ten female nurses from two general surgical departments were interviewed. The transcribed interviews were analysed using the hermeneutic narrative method inspired by Polkinghorne.

    Results. The nurses report that they have what may be described as a set of different tools at their disposal. These tools can be entitled 'listen and understand', 'information', 'the clinical eye' and 'availability', all of which can be used in solving several needs. However, some nurses have better skills or more opportunities to use the available tools than do others. By using these tools, the nurses can increase their possibilities for enhancing the patients' efforts to gain control over their own situation and thereby increase the quality of their care.

    Conclusion. Nurses use different types of tools to relieve postoperative nausea and vomiting and it is possible to create a positive nursing care situation if patients are given the opportunity to be in control and handle their own situation.

    Relevance to clinical practice. When it comes to relieving postoperative nausea and vomiting, the findings of this study are important as the study highlights the practical actions taken by nurses and their experiences. When nurses have the possibility to use their nursing tools in an optimal way, together with their experience and knowledge and then follow their nursing actions by being able to reflect on them, they can further develop their approach to nursing and thereby increase their competence as nurses.

  • 61.
    Börjeson, Sussanne
    et al.
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology UHL.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine, Oncology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology UHL.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Common symptoms experienced among patients with colorectal cancer, and barriers to reporting symptoms or distress; the staff perspective2011In: Austral-Asian Journal of Cancer, ISSN 0972-2556, Vol. 10, no 1, p. 12-20Article in journal (Refereed)
  • 62.
    Börjeson, Sussanne
    et al.
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine, Oncology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Unosson, Mitra
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Common Symptoms and Distress Experienced Among Patients with Colorectal Cancer: A Qualitative part of Mixed Method Design2012In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 6, no 1, p. 100-107Article in journal (Refereed)
    Abstract [en]

    Background :

    Colorectal cancer is one of the most common types of tumour in the world. Treatment side effects, together with the tumour symptoms, can result in a ‘symptom burden’. To understand the patient’s burden during chemotherapy treatment and plan effective symptom relief there is a need for more knowledge about the experience of symptoms from the patients’ perspective.

    Objectives :

    The study was designed to qualitatively identify and describe the most common symptoms among patients treated for colorectal cancer, and discover whether there are barriers to reporting symptoms.

    Methods :

    Thirteen Swedish patients diagnosed with colorectal cancer and treated with chemotherapy were interviewed face-to-face. The interviews were audio-taped and transcribed verbatim. The transcripts were analysed by following the principles of qualitative content analysis.

    Results :

    Nine symptoms/forms of distress were identified. Those most frequently expressed were fatigue, changed bowel habits, and affected mental well-being, closely followed by nausea, loss of appetite and neurological problems. Of particular note were the affected mental well-being, the magnitude of the neurological problems described, the symptoms related to skin and mucous membrane problems, and the reports of distressing pain. Barriers to symptom control were only expressed by the patients in passing and very vaguely.

    Conclusion :

    This study confirms other reports on most common symptoms in colorectal cancer. It also highlights the early onset of symptoms and provides data on less well-studied issues that warrant further study, namely affected mental well-being, the magnitude of the neurological problems and symptoms related to the skin and mucous membranes. Nurses need to be sensitive to the patients’ need presented and not only noting symptoms/distresses they have guidelines for.

  • 63. Caldas, Celia P.
    et al.
    Berterö, Carina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Living as an oldest old in Rio de Janerio: The lived experience told2007In: Nursing Science Quarterly, ISSN 0894-3184, E-ISSN 1552-7409, Vol. 20, no 4, p. 376-382Article in journal (Refereed)
    Abstract [en]

    This phenomenological-hermeneutic study was an inquiry into the lived experience of 16 very old persons who were living in their own homes. The nursing perspective was Gadow's existential advocacy for nursing practice. The study findings led to the essence of the phenomenon: pragmatic transition to old age, within a restricted 14 future. Heideggerian concepts were applied and the findings were discussed in relation to the guiding theoretical perspective and related literature. Understanding the meaning of being a very old person is fundamental to developing nursing interventions to help people remain independent, with a sense of self-determination, for as long as possible.

  • 64.
    da Costa vargens, Octavio
    et al.
    Rio de Janeiro.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Living with breast cancer: Its effect on the life situation and the close relationship of women in Brazil2007In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 6, p. 471-478Article in journal (Refereed)
    Abstract [en]

    The diagnosis and treatment of breast cancer induces adverse effects. In this interpretive phenomenological study, 11 Brazilian women diagnosed and treated for breast cancer were interviewed. Data included audiotaped interviews where the women's lived experiences were articulated. Data were interpreted through Heidegger's existential phenomenology. Themes that were found were interrelated and presented the essential structure of the essence the women were living-living side by side with the phantom of death. The 4 themes that were interpreted and identified were as follows: gaining a positive attitude for life, wanting to be recognized as a woman with certain needs, considering body image/self-image, and making efforts to hide. The findings of the study point out the importance of the fact that illness elicits more than fitting the body into traditional community expectations or surrendering the body to professional medicine. Even with all the deep changes in their lives and changed life priorities, the women want to carry on and live the best life they could. To put this idea in the front line makes the difference for the transition of these women. © 2007 Lippincott Williams & Wilkins, Inc.

  • 65.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Börjeson, Sussanne
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine. Linköping University, Faculty of Health Sciences.
    Neurotoxiska symtom vid adjuvant cytostatikabehandling hos patienter med kolorektalcancer2012Conference paper (Other academic)
  • 66.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Fomichov, Victoria
    Region Östergötland, Center for Business support and Development, Department of Health and Care Development.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine, Division of Surgery, Orthopedics and Oncology. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Börjeson, Sussanne
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Kjellgren, Karin I.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Oxaliplatin-Induced Neurotoxic Side Effects and Their Impact on Daily Activities2019In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804Article in journal (Refereed)
    Abstract [en]

    Background: Oxaliplatin (OXA) is frequently used in the treatment of patients with colorectal cancer, and OXA-induced neurotoxic side effects are common. Reports on real-time patient-reported neurotoxic side effects and impact on the patient's daily activities are sparse in existing studies. Objective: The aim of this study was to identify and assess patient-reported OXA-induced neurotoxic side effects and their impact on the patient's daily activities, during and after chemotherapy. Methods: In a multicenter prospective longitudinal study, 46 chemo-naïve patients with colorectal cancer treated with postoperative adjuvant OXA-based chemotherapy were monitored during treatment and at 3-, 6-, 9-, and 12-month follow-ups. Patients were recruited from September 2013 to June 2016. In total, 370 Oxaliplatin-Associated Neurotoxicity Questionnaire responses were available for analysis. A mobile phone-based system was used to receive real-time assessments. Results: All patients reported neurotoxic side effects and impact on daily activities during treatment. The side effects changed in character and body location over time and had an impact on the daily activities. Conclusions: The high prevalence of OXA-induced neurotoxic side effects significantly interfered with the patients' daily activities. We found significant differences between baseline data and follow-up time points for neurotoxicity, and the patients had not returned to baseline after 1 year. Implications for Practice: The real-time assessment using mobile phone technology seems to be a valuable tool for monitoring patient-reported neurotoxicity and interventions for tailored care. Effectively identifying neurotoxicity and its impact on the patient's daily activities is important in supportive cancer care.

  • 67.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Börjeson, Sussanne
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Identifying Oxaliplatin induced Neurotoxicity in Medical records - strengthening compassion2014Conference paper (Other academic)
  • 68.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Börjeson, Sussanne
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Oxaliplatin induced neurotoxicity among patients with colorectal cancer: documentation in medical records - a pilot study2014In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 4, p. 265-274Article in journal (Refereed)
    Abstract [en]

    Patients with colorectal cancer (CRC) can have chemotherapy with oxaliplatin postoperatively.Oxaliplatin can cause acute and chronic neurotoxicity. It is important to be aware of neurotoxicside effects so they can be documented and action taken at an early stage. The study aimed toidentify and explore neurotoxic side effects documented in the medical records of patients withcolorectal cancer treated with oxaliplatin-based adjuvant chemotherapy. Data in this study weremedical records; presenting documentation about patients treated at the University Hospital inthe south of Sweden between 2009 and 2010. A summative content analysis approach was used toexplore the neurotoxic side effects. Identification and quantification of the content of medical recordswere carried out by using a study-specific protocol. “Cold sensitivity” and “tingling in thehands” were the most frequently documented neurotoxicity-related terms in the medical records.This identification was followed by interpretation. Three categories were identified in the interpretivepart of the study: acute, chronic, and degree of neurotoxicity. The results show the importanceof awareness of neurotoxic side effects so that they can be documented and action taken atan early stage. The documentation could be more reliable if patient-reported structured measurementswere used, combined with free descriptions in the medical records. Being able to followthe progression of the symptoms during and after treatment would improve patient’s safety andalso quality of life. The protocol that we developed and used in this review of medical records maybe helpful to structure the documentation in the electronic system for documentation of neurotoxicityside effects.

     

  • 69.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Kjellgren, Karin
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    The trajectory of neurotoxic side effects' impact on daily life: a qualitative study2016In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 8, p. 3455-3461Article in journal (Refereed)
    Abstract [en]

    PURPOSE:

    The purpose of this study was to explore the experiences of oxaliplatin-induced neurotoxic side effects among patients with colorectal cancer (CRC) and how these side effects influenced their daily lives over time.

    METHODS:

    To assess neurotoxic side effects, ten patients were repeatedly interviewed. The patients were recruited from two hospitals in south of Sweden, had stage II-III CRC, and had been treated with adjuvant oxaliplatin postoperatively, from November 2013 to October 2015. They had received FOLFOX and XELOX, with a mean total dose of 791 mg oxaliplatin. After completed chemotherapy, at 3, 6, and 12 months into the post-treatment phase, 25 interviews were conducted and thematic analysis was used according to Braun and Clarke.

    RESULTS:

    Oxaliplatin-induced neurotoxicity affects patients in several ways in the long term. Four themes were identified: Expectation of cure, Dubiety, Normalization, and Learn to live with neurotoxicity. The findings of this study describe the trajectory of neurotoxicity and its impact on these patients' life situation. The findings confirmed that neurotoxicity is multi-faceted and that the experience of it changes over time.

    CONCLUSION:

    The desire to survive stimulates adaptations and strategies to manage daily life, and patients learn to live with the neurotoxic side effects. This study provides evidence that these patients need individual attention and support during the trajectory of neurotoxic side effects. Current care provision is inadequate due to a lack of knowledge of the ways in which neurotoxicity impacts the patient's daily life. This study provides insights that could be used to develop a more person-centered care.

  • 70.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Starkhammar, Hans
    Linköping University, Department of Clinical and Experimental Medicine, Division of Surgery, Orthopedics and Oncology. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    Kjellgren, Karin I.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Neurotoxic Side Effects Early in the Oxaliplatin Treatment Period in Patients With Colorectal Cancer2018In: Oncology Nursing Forum, ISSN 0190-535X, E-ISSN 1538-0688, Vol. 45, no 6, p. 690-697Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To identify and describe experiences of patients with colorectal cancer (CRC) who have neurotoxic side effects early in the oxaliplatin treatment period, and how neurotoxicity affects their daily lives.

    PARTICIPANTS & SETTING: 10 patients with stage II-III CRC were included. All were treated with adjuvant oxaliplatin postoperatively and assessed neurotoxicity via a platform-independent mobile phone-based system. Patients were recruited from two hospitals in southern Sweden from November 2013 to August 2014.

    METHODOLOGIC APPROACH: Qualitative interview study conducted through open-ended, face-to-face, qualitative interviews. Thematic analysis was used.

    FINDINGS: A main theme was identified.

    IMPLICATIONS FOR NURSING: Nurses have an obligation to communicate the importance of early detection of neurotoxicity. Mobile phone technology seems to be a valuable tool for monitoring patient-reported neurotoxicity to improve communication and supportive care.

  • 71.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Vilhelmsson, Maria
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Kjellgren, Karin
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Experiences with a self-reported mobile phone-based system among patients with colorectal cancer: a qualitative study2016In: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 4, no 2, p. 182-190, article id e66Article in journal (Refereed)
    Abstract [en]

    Background: In cancer care, mobile phone-based systems are becoming more widely used in the assessment, monitoring, and management of side effects.

    Objective: To explore the experiences of patients with colorectal cancer on using a mobile phone-based system for reporting neurotoxic side effects.

    Methods: Eleven patients were interviewed (ages 44-68 years). A semistructured interview guide was used to perform telephone interviews. The interviews were transcribed verbatim and analyzed with qualitative content analysis.

    Results: The patients' experiences of using a mobile phone-based system were identified and constructed as: “being involved,” “pacing oneself,” and “managing the questions.” “Being involved” refers to their individual feelings. Patients were participating in their own care by being observant of the side effects they were experiencing. They were aware that the answers they gave were monitored in real time and taken into account by health care professionals when planning further treatment. “Pacing oneself” describes how the patients can have an impact on the time and place they choose to answer the questions. Answering the questionnaire was easy, and despite the substantial number of questions, it was quickly completed. “Managing the questions” pointed out that the patients needed to be observant because of the construction of the questions. They could not routinely answer all the questions. Patients understood that side effects can vary during the cycles of treatment and need to be assessed repeatedly during treatment.

    Conclusions: This mobile phone-based system reinforced the patients’ feeling of involvement in their own care. The patients were comfortable with the technology and appreciated that the system was not time consuming.

  • 72.
    Drott, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Wilhelmson, Maria
    Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Kolorektal cancer patienters upplevelser av att besvara symtom via ett mobiltelefonbaserat system2015Conference paper (Other academic)
  • 73.
    Ekholm, Karolina
    et al.
    Östergötlands Läns Landsting, Centre for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology UHL.
    Grönberg, Carolin
    Östergötlands Läns Landsting, Centre for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology UHL.
    Börjeson, Sussanne
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    The next of kin experiences of symptoms and distress among patients with colorectal cancer: diagnosis and treatment affecting the life situation2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 2, p. 125-130Article in journal (Refereed)
    Abstract [en]

    Purpose

    To identify symptoms/distress among patients with colorectal cancer undergoing chemotherapy, from the viewpoint of the next of kin, and to establish whether there are any barriers to reporting these problems.

    Methods

    Individual face-to-face interviews with fourteen next of kin were conducted. Qualitative content analysis was used to analyse the transcripts.

    Results

    Three areas were identified: symptoms presented, barriers to reporting symptoms/distress, and influences on life for the next of kin. Nine symptoms were raised as most common by the next of kin. Almost all the next of kin denied that they had experienced any barriers to reporting symptoms/distress but some did exist, namely barriers to proper communication and barriers of time. The next of kin made another interpretation of barriers; they did not interpret it as hinder or obstacle. All next of kin talked to a large extent about how the patient's disease and treatment affected them as next of kin. It affected them psychologically, they had to re-valuate their life, and it influenced their social life.

    Conclusions

    The symptoms reported during chemotherapy were similar to those found in other studies on patients. Barriers to reporting symptoms were mentioned, but not to a great extent. Although it was not the main purpose of the study, the next of kin raised concerns about the patient's disease and treatment and how it influenced next of kin life.

  • 74.
    Elmerstig, Eva
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Gender and medicine . Linköping University, Faculty of Health Sciences.
    Wijma, Barbro
    Linköping University, Department of Clinical and Experimental Medicine, Gender and medicine . Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Gynecology and Obstetrics in Linköping.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Why do young women continue to have sexual intercourse despite pain?2008In: Journal of Adolescent Health, ISSN 1054-139X, Vol. 43, no 4, p. 357-363Article in journal (Refereed)
    Abstract [en]

    Purpose: Many young women suffer from pain and discomfort during sexual intercourse, and an increasing number of them seek help for their problems. It seems that some young women continue to have sexual intercourse despite pain. However, their motives are unclear.

    Methods: A total of 16 women, aged 14-20 years, with variable degrees of coital pain were selected at a youth center in a city in southeastern Sweden, to explore why they continued to have sexual intercourse despite pain. The women participated in audiotaped qualitative individual interviews, which were analyzed using the constant comparative method from grounded theory.

    Results: During the analysis we identified the core category striving to be affirmed in their image of an ideal woman and the categories resignation, sacrifice and feeling guilt.

    The perceived ideal women had several distinct characteristics, such as willingness to have sexual intercourse, being perceptive of their partner’s sexual needs, and being able to satisfy their partners.

    Having sexual intercourse per se was considered to be an affirmation of being a normal woman, irrespective of pain or discomfort.

    Conclusions: These young women’s focus on a constructed ideal explains why they continue to have sexual intercourse despite pain.

    Greater awareness of these beliefs among gynaecologists, sexologists, and other healthcare professionals involved in the management of young women with coital pain would be beneficial.

  • 75.
    Elmerstig, Eva
    et al.
    Malmö University, Sweden.
    Wijma, Barbro
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Linköping.
    Sandell, Kerstin
    Lund University, Sweden.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Sexual interaction or a solitary action: young Swedish men's ideal images of sexual situations in relationships and in one-night stands2014In: Sexual & Reproductive HealthCare, ISSN 1877-5756, E-ISSN 1877-5764, Vol. 5, no 3, p. 149-155Article in journal (Refereed)
    Abstract [en]

    Objective

    It seems that traditional gender norms influence young women's and men's sexuality differently. However, little attention has been paid to ideal images of sexual situations. This study identifies young heterosexual men's ideal images of sexual situations and their expectations of themselves in sexual situations.

    Study design

    The present study employs a qualitative design. Twelve Swedish men (aged 16–20) participated in individual in-depth qualitative interviews. The interviews were transcribed verbatim and analysed using the constant comparative method from grounded theory.

    Results

    Our study revealed that the young men's conceptions of normal sexual situations were divided into two parts: sexual situations in relationships, and sexual situations in one-night stands. Their ideal image, “a balanced state of emotional and physical pleasure”, was influenced by the presence/absence of intimacy, the partner's response, and their own performance. The greatest opportunities to experience intimacy and the partner's response were found during sexual situations in relationships. In one-night stands, the men wanted to make a good impression by performing well, and behaved according to masculine stereotypes.

    Conclusion

    Stereotyped masculinity norms regulate young heterosexual men's sexuality, particularly in one-night stands. Sexual health promotion should emphasize the presence of these masculinity norms, which probably involve costs in relation to young men's sexual wellbeing.

  • 76.
    Elmerstig, Eva
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Gender and medicine. Linköping University, Faculty of Health Sciences.
    Wijma, Barbro
    Linköping University, Department of Clinical and Experimental Medicine, Gender and medicine. Linköping University, Faculty of Health Sciences.
    Sandell, Kerstin
    Centrum för genusvetenskap, Lunds universitet.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    "Sexual pleasure on equal terms": Young women´s ideal sexual situations2012In: Journal of Psychosomatic Obstetrics and Gynaecology, ISSN 0167-482X, E-ISSN 1743-8942, Vol. 33, no 3, p. 129-134Article in journal (Refereed)
    Abstract [en]

    Purpose: We wanted to identify young women’s ideal images of sexual situations and expectations of themselves in sexual situations.

    Methods: We conducted audiotaped qualitative individual interviews with 14 women aged 14 to 20 years, visiting two youth centers in Sweden. The data were analyzed with constant comparative analysis, the basis of grounded theory methodology.

    Results: The women’s ideal sexual situations in heterosexual practice were characterized by sexual pleasure on equal terms, implying that no one dominates and both partners get pleasure. There were obstacles to reaching this ideal, such as influences from social norms and demands, and experiences of the partner’s “own race”. An incentive to reach the ideal sexual situation was the wish to experience the source of pleasure.

    Conclusions: Our research further accentuates the importance of finding ways to focus on the complexity of unequal gender norms in youth heterosexuality. A better understanding of these cognitions is essential and useful among professionals working with youths´ sexual health.

  • 77.
    Enskär, Karin
    et al.
    Hälsohögskolan Jönköping.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Young adult survivors of childhood cancer; experiences affecting self-image, relationships and present life2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, p. E18-E24Article in journal (Refereed)
    Abstract [en]

    Knowledge about how young adults experience being a childhood cancer survivor is limited, as most previous research concerning the quality of life in survivors of childhood cancer has been conducted using standardized questionnaires. The aim of the current study was to identify and describe young adults' own experiences of long-term effects of cancer treatment on their self-image, relationships, and present life related to the impact of being a survivor of childhood cancer. Interviews were held with 7 young adults, 20 to 23 years of age. The verbatim-transcribed interviews were analyzed using constant comparative analysis. The core category was identified as "compensated life picture." All the negative and difficult experiences are compensated for with a positive view on and positive expectations regarding life. This core category was grounded in 5 categories: living a normal life, bodily changes, relationships with and support from others nearby, sentient life, and personal growth. The findings in this study illustrate the importance for healthcare staff to be aware of young adult survivors' experiences of their childhood cancer and its long-term effects. Extra attention and support from the healthcare system after the concluded treatment period are needed via a support program or support group for young adults.

  • 78.
    Fägerskiöld, Astrid M.
    et al.
    University College of Health Sciences, Jönköping, Sweden.
    Berterö, Carina M.
    Linköping University, Department of Medicine and Care, Nursing Science. Linköping University, Faculty of Health Sciences.
    How child health care nurses view a mother-infant relationship: A qualitative study1996In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 10, no 3, p. 180-185Article in journal (Refereed)
    Abstract [en]

    Too many children in Sweden grow up under difficult circumstances. Every child should have the opportunity to grow up to be a confident person. We know today that the new-born child is able to influence its surroundings. The main purpose of child health care in Sweden is to reduce mortality, morbidity and disability in children, and also to reduce any detrimental effects on the family. Child Health Care (CHC)-nurses provide continuity and security for parents and children in developing relationships. The aims of this study were to identify how CHC-nurses view a mother-infant relationship, and how they can improve this relationship. Ten CHC-nurses were interviewed about mother-infant relationships. Verbatim transcripts were analysed using constant comparative analysis. The emerging core category was interplay. Under this construct there were two categories; maternal ability and signals from the infant. Different substantive codes were given under these categories, viz. body language, vocal language, poor health, expectations and life situation. In describing how to improve the mother-infant relationship, promoting an understanding of interplay was the core category. Three categories/strategies were perceived; visualize, respect and demonstrate. The results were then compared with the literature. This study indicates that interplay is of greatest importance in a mother-infant relationship.

  • 79.
    Grundström, Hanna
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Norrköping.
    Alehagen, Siw
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Kjölhede, Preben
    Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Linköping.
    Impact of Pelvic Pain and Endometriosis on Patient-Reported Outcomes and Experiences of Benign Hysterectomy: A Study from the Swedish National Register for Gynecological Surgery2018In: Journal of Women's Health, ISSN 1540-9996, E-ISSN 1931-843X, Vol. 27, no 5, p. 691-698Article in journal (Refereed)
    Abstract [en]

    Background: The study objective was to analyze and compare patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) after hysterectomy in women with and without a preoperative complaint of pelvic pain associated with and without a confirmed diagnosis of endometriosis. Methods: Retrospective nationwide register study. Data on 28,776 hysterectomies performed on benign indication between 2004 and 2016 were retrieved from the Swedish National Register for Gynecological Surgery. Multivariable logistic regression models were used to compare the PREMs and PROMs items. The results are presented as adjusted odds ratios (aORs) and 95% confidence intervals (CI). Results: Regardless of the occurrence of pelvic pain preoperatively and a diagnosis of endometriosis, 1 year after surgery, the women were satisfied or very satisfied (amp;gt;90%) with the hysterectomy, and their medical condition was improved or much improved (amp;gt;95%). The women with a preoperative complaint of pelvic pain and endometriosis more often reported excessively short hospital stays (aOR 1.45, 95% CI 1.17-1.79), more severe complications after discharge (aOR 2.02, 95% CI 1.59-2.66) at the 8-week follow-up and at the 1-year follow-up (aOR 2.31, 95% CI 1.57-3.39), and more dissatisfaction with the operation (aOR 1.83, 95% CI 1.35-2.48) than preoperative pelvic pain-free women without endometriosis at the 1-year follow-up. Conclusions: The majority of the women were satisfied after their hysterectomy. The women with pelvic pain and endometriosis were at a higher risk of being dissatisfied. Pelvic pain per se seemed to be the main factor affecting the rating in the PREMs and PROMs, and the endometriosis was a significant contributing factor.

  • 80.
    Grundström, Hanna
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Norrköping.
    Gerdle, Björn
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Alehagen, Siw
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Arendt-Nielsen, Lars
    Center for Sensory‐Motor Interactions, Department of Health Science and Technology, Faculty of Medicine, Aalborg University, Aalborg, Denmark.
    Kjölhede, Preben
    Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Linköping.
    Reduced pain thresholds and signs of sensitization in women with persistent pelvic pain and suspected endometriosis2019In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 98, no 3, p. 327-336Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Endometriosis is a gynecological disorder that may cause considerable pelvic pain in women of fertile age. Determining pain mechanisms is necessary in order to optimize the treatment of the disease. The objective of the study was to evaluate pain thresholds in women with persistent pelvic pain with and without confirmed endometriosis, and healthy, unaffected controls, and analyze how pain thresholds in these cohorts related to duration of pelvic pain, quality of life, and symptoms of anxiety and depression.

    MATERIAL AND METHODS: Pain thresholds for heat, cold and pressure were assessed with quantitative sensory testing on six locations on a reference group of 55 healthy women and on 37 women with persistent pelvic pain who had been admitted for diagnostic laparoscopy on the suspicion of endometriosis. Validated instruments were applied to assess quality of life and symptoms of anxiety and depression. Data were analyzed by means of uni- and multivariate analysis of variance and Spearman's rank-order correlation.

    RESULTS: The women with persistent pelvic pain had significantly lower pain thresholds compared with the reference women. In the women with pain, no differences were observed in pain thresholds between women with (n = 13) and women without (n = 24) biopsy-proven endometriosis. The duration of pelvic pain correlated significantly positively with reduced pain thresholds, ie, the longer the duration, the more sensitization. In the persistent pelvic pain group, pain thresholds for heat correlated significantly with the Short Form Health Survey 36 dimension of bodily pain, and thresholds for cold correlated with Short Form Health Survey 36 bodily pain and with symptoms of depression.

    CONCLUSIONS: Our results showed widespread alterations in pain thresholds in women with persistent pelvic pain that are indicative of central sensitization and a time-dependent correlation. Women with pelvic pain and suspicion of endometriosis should probably be treated more thoroughly to prevent or at least minimize the concomitant development of central sensitization.

    The full text will be freely available from 2019-11-25 12:48
  • 81.
    Grundström, Hanna
    et al.
    Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Norrköping. Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Medicine and Health Sciences.
    Kjølhede, Preben
    Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Linköping. Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Alehagen, Siw
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    “A challenge” – healthcare professionals' experiences when meeting women with symptoms that might indicate endometriosis2016In: Sexual & Reproductive HealthCare, ISSN 1877-5756, E-ISSN 1877-5764, Vol. 7, p. 65-69Article in journal (Refereed)
    Abstract [en]

    Objective

    The aim of the study was to identify and describe the experiences of healthcare professionals when meeting women with symptoms that might indicate endometriosis.

    Methods

    Semi-structured interviews were conducted with 10 gynecologists, six general practitioners and nine midwives working at one university hospital, one central hospital, one private gynecology clinic and five healthcare centers in south-east Sweden. The interviews were recorded and transcribed verbatim and analyzed using qualitative conventional content analysis.

    Results

    Three clusters were identified: the corroborating encounter, the normal variation of menstruation cycles, and the suspicion of endometriosis. The healthcare professionals tried to make a corroborating encounter by acknowledging the woman, taking time to listen, and giving an explanation for the problems. Healthcare professionals had different ways to determine what was normal as regards menstrual pain, ovulation pain and dyspareunia. They also needed to have the competence to act and react when the symptoms indicated endometriosis.

    Conclusions

    Meeting women with symptoms that might indicate endometriosis is challenging and demands a certain level of competence from healthcare professionals. Sometimes the symptoms are camouflaged as “normal” menstruation pain, making it hard to satisfy the needs of this patient group.

  • 82.
    Grundström, Hanna
    et al.
    Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Gynecology and Obstetrics in Norrköping.
    Wallin, Karin
    Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Gynecology and Obstetrics in Linköping.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    'You expose yourself in so many ways': young women's experiences of pelvic examination2011In: Journal of Psychosomatic Obstetrics and Gynaecology, ISSN 0167-482X, E-ISSN 1743-8942, Vol. 32, no 2, p. 59-64Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to identify and describe young women's experiences of pelvic examination (PE). Qualitative interviews were conducted with nine women aged 18--23 years, who had undergone at least one PE. Data were analysed using an interpretative phenomenological approach. Three general themes were identified: (1) relinquishing and regaining control, (2) facilitation of the situation by the examiner and (3) PE is an unpleasant necessity. These general themes had a common structure that represented the essence: an intimate situation. The women experienced PE as an intimate situation, which they associated with their sexuality. They felt exposed both bodily and mentally and were placed in a vulnerable situation. PE was considered as unpleasant but necessary to confirm their health. During the PE, the women felt that they lost control of the situation by exposing their intimate parts. To regain control, the women felt a need for continuous information from the examiner. The vulnerable situation could be made less vulnerable if the examiner built a trusting relationship and made the women feel secure and seen as individuals. A deeper understanding of the situation from the women's perspective could facilitate the examiner's performance of PE, leading to more positive experiences among young women.

  • 83.
    Gunhardsson, Inger
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Svensson, Anna
    Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Berterö, Carina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Documentation in palliative care: Nursing documentation in a palliative care unit - A pilot study2008In: AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE, ISSN 1049-9091, Vol. 25, no 1, p. 45-51Article in journal (Refereed)
    Abstract [en]

    Palliative care seeks to enhance quality of life in the face of death by addressing the physical, psychological, social, and spiritual needs of patients with advanced disease. The purpose of this paper is to explore whether palliative patients needs, nursing actions, and evaluation can be identified in the nursing documentation. Data consisted of reviews of patients' case records in a palliative care unit. Data were analyzed using content analysis and counting frequency of keywords used from the Well-being Integrity Prevention and Safety (VIPS) model, followed by an inductive analysis of the case record documentation aiming to identify palliative care components. The result shows that the documentation revealed physical care, especially pain, more frequently than other needs. Nursing documentation focuses on identification more than on nursing actions and evaluation.

  • 84.
    Gustafsson, E.
    et al.
    Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Litström, Emma
    Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Drott, Jenny
    Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Reliability testing of oxaliplatin-associated neurotoxicity questionnaire (OANQ), a pilot study2016In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 2, p. 747-754Article in journal (Refereed)
    Abstract [en]

    PURPOSE:

    The purpose of this study was to test the reliability of the Swedish version of the Oxaliplatin-Associated Neurotoxicity Questionnaire (OANQ) administrated throughout a self-reported mobile phone-based system, a pilot study.

    METHODS:

    Twenty-three patients from two university hospitals and two regional hospitals who had been treated with oxaliplatin were included through purposive sampling between autumn 2013 to autumn 2014. A test-retest was performed through a mobile phone-based system, with a recall period of 1 h to determine the reliability of the questionnaire.

    RESULTS:

    Internal consistency was strong for the three domains of the scale (α > 0.840). The statistical analyses for the test-retest indicated that the OANQ was stable. Intraclass correlation (ICC) for symptom items and effect on daily activities items showed an overall excellent reproducibility at 69 and 83 %, respectively. The weighted kappa for symptom items and daily activities items showed an overall almost perfect agreement at 59 and 52 %, respectively. A paired samples t test did not reveal any significant differences between the two measures.

    CONCLUSIONS:

    The OANQ was tested and considered a reliable assessment for capturing the oxaliplatin-induced peripheral neurotoxicity (OIPN) in patients receiving oxaliplatin. However, further reliability testing of the OANQ is needed.

  • 85.
    Gustafsson, Elin
    et al.
    Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Litström, Emma
    Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Drott, Jenny
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Reliability testing of Oxaliplatin-Associated Neurotoxicity Questionnaire (OANQ)2015Conference paper (Refereed)
  • 86.
    Hanberger, Lena
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics.
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Ludvigsson, Johnny
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    The influence of process, structure and policy on Haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes2012In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 96, no 3, p. 331-338Article in journal (Refereed)
    Abstract [en]

    Objective: We aimed to identify factors for improvements of mean A1C at centres treating children and adolescents with diabetes.

    research Design and methods: Through data from the Swedish paediatric diabetes quality registry, SWEDIABKIDS, five centres with the lowest mean A1C (Low group), five with the highest (High group), and five with the largest decrease in centre mean A1C (Decrease group) were identified. The diabetes team members completed a questionnaire, response rate 85%, (109/128) and reported team structure and process. Open-ended questions regarding messages to patients about important diabetes matters were analysed with summative content analysis.

    Results: Compared to the High group, the Low and Decrease groups showed shorter professional experience and lower proportion of special diabetes-educated team members, and higher compliance with guidelines. Trends for higher mean insulin dose, larger centre size and larger team size were found. The content analysis indicated that the Low and Decrease groups gave a clear message and had lower A1C target value. The team members in these groups were engaged, had a positive attitude and a perception of a well-functioning team. The High group gave a vague message, needed more frames and had a perception of lack of cooperation in the team.

    Conclusions: The team members' approach seems to affect metabolic control in children and adolescents. The team members need to be aware of their approach and how it affects patients and parents, and also of the importance of the possibility of using resources and competence within the team.

  • 87.
    Hellqvist, Carina
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Neurology.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Support supplied by Parkinson's disease specialist nurses to Parkinson's disease patients and their spouses2015In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 28, no 2, p. 86-91Article in journal (Refereed)
    Abstract [en]

    AIM:

    The purpose of the study was to identify the role of the Parkinson's disease specialist nurse in providing support both for people with Parkinson's disease (PD) and their spouses.

    BACKGROUND:

    PD is a neurodegenerative disease with symptoms that affect many aspects of daily life. In Sweden, specialised nurses called Parkinson's disease specialist nurses (PD specialist nurses) have been working for over a decade to support PD patients and their families.

    METHOD:

    A qualitative approach was taken using dyad interviews with each PD patient and spouse. The analysis was conducted using conventional qualitative content analysis.

    FINDINGS:

    The analysis resulted in the identification of one overarching category; competent, professional practice, tailored for the individual. Four categories: professional competence, nursing practice, continuity of contact and emotional support, are distinct but related to each other and show different nuances of the same phenomenon.

    CONCLUSION:

    The work of PD specialist nurses in providing support to PD patients and their relatives should be tailored to individual patients and their families as well as including skilled nursing care to relieve the impact of the disease on daily life

  • 88.
    Hellqvist, Carina
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Neurology.
    Dizdar Segrell, Nil
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Neurology.
    Hagell, Peter
    Kristianstad Univ, Sweden.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Sund-Levander, Märtha
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Improving self-management for persons with Parkinsons disease through education focusing on management of daily life: Patients and relatives experience of the Swedish National Parkinson School2018In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 19-20, p. 3719-3728Article in journal (Refereed)
    Abstract [en]

    Aims and objectiveTo identify and describe experiences valuable formanaging daily life after participation in the NPS self-management intervention. The second part was to explore the applicability of the Self- and family management framework by Grey and colleagues for persons with Parkinsons Disease and their relatives. BackgroundThe impact of PD is evident on the lives of both patients and relatives. The National Parkinson School (NPS) is a Swedish self-management programme designed for patients and relatives, aiming at teaching strategies helpful for the ability of self-management, in order to promote life satisfaction. DesignQualitative explorative with inductive and deductive analysis. MethodsFive group discussions with NPS participants were audio-recorded. Verbatim transcriptions were analysed inductively with thematic analysis according to Braun and Clarke, and the findings were then applied deductively to the existing model for patients with chronic disease. ResultsThrough the first step of inductive analysis, three themes capturing the meaning, value and experience of being a participant at the NPS were identified: exchanging experiences and feeling support, adjustment and acceptance of PD for managing daily life and promoting life satisfaction. The deductive analysis applied the inductive findings to the Self- and family management framework of chronically ill to explore the fit to persons with PD and relatives attending the NPS programme. ConclusionsThe NPS programme is a promising approach for helping persons with PD and their relatives to achieve better self-management of disease and improved life satisfaction. Further evaluations of programme outcomes in clinical practice are warranted. Relevance of clinical practiceSelf-management programmes like the NPS is a promising approach in facilitating a positive mindset and outlook on life and gain knowledge to understand, adapt and handle chronic disease, such as PD, better.

  • 89.
    Hjelm, Eva
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medical and Health Sciences, Nursing Science.
    Hartwig, Kerstin
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Department of Welfare and Care (IVV). Linköping University, The Institute of Technology.
    Berterö, Carina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medical and Health Sciences, Nursing Science.
    An inevitable journey by train: Nurses' narratives about palliative care2007In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 9, no 4, p. 206-211Article in journal (Refereed)
    Abstract [en]

    The purpose of this article is to explore the meaning of palliative care in the context of the caring relationship described by nurses providing such care in the home. Eleven nurses were interviewed, and the transcripts were analyzed using the hermeneutic narrativism method. The study found that the nurses'' narrative account of a caring relationship can be represented by a metaphor: an inevitable journey by train, characterized by the three themes of transit points, time, and guidance. Each journey passes through the same four points in chronological order. Time always moves forward, but the duration of the journey can be either long or short. Having more time creates better conditions for developing a caring relationship. The nurse provides guidance through a journey that she has made before, although each journey is unique. A caring relationship signifies commitment and involvement. © 2007 Lippincott Williams & Wilkins, Inc.

  • 90.
    Hjelm, Katarina
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Dissimilarities in Social Support as  Described by Swedish- and Foreign-Born Persons Diagnosed with Type 2 Diabetes and Living in Sweden2014In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 4, no 3, p. 211-222Article in journal (Refereed)
    Abstract [en]

    Diabetes (DM) requires self-care that is demanding and may cause stress. Social support canbuffer effects of stress. No previous study has been found comparing perceptions of foreign-bornpersons with DM, concerning the content of and need for social support with a population of origin.The aim was to compare the meaning of support and its impact on the life situation in Swedishandforeign-born persons diagnosed with type 2 DM living in Sweden. A purposive sample of 74persons; 34 foreign- and 40 Swedish-born, aged 32 - 80 years, diagnosed with type 2 DM, was included.The foreign-born persons were mostly Middle Eastern and Ex-Yugoslavian refugees. Mixedmethods were used and data were collected by qualitative interviews and quantitative data collectedby the Norbeck Social Support Questionnaire (NSSQ). Studying the figures measured byNSSQ, no significant differences were found according to gender but foreign-born men scoredlower than Swedish, especially in emotional support and aid. The main findings showed that respondents,irrespective of origin, described the meaning of the concept of support mainly as informationsupport in learning to manage DM. However, foreign-born persons also focused onmedical support with regular follow-ups while Swedes emphasized the need for emotional support.Foreign- and Swedish-born persons are in general more similar than dissimilar in describingthe meaning, need and impact of support. Irrespective of origin they want to learn to manage theirdisease and thus desire and need regular follow-up and information immediately from being diagnosed.Further studies are needed as the study is based on a limited sample.

  • 91.
    Hjelm, Katarina
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Berterö, Carina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Social support as described by Swedish people diagnosed with type 2 diabetes mellitus2009In: Primary Health Care Research and Development, ISSN 1463-4236, E-ISSN 1477-1128, Vol. 10, p. 26-37Article in journal (Refereed)
  • 92.
    Hollman Frisman, Gunilla
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Berterö, Carina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Having knowledge of metabolic syndrome: Does the meaning and consequences of the risk factors influence the life situation of Swedish adults?2008In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 10, no 4, p. 300-305Article in journal (Refereed)
    Abstract [en]

    The underlying causes of metabolic syndrome (MS) are uncertain. Knowledge from those who have experience of this syndrome should provide new insight. The aim was to explore the meaning and consequences of MS. Thirteen Swedish adults with MS, aged between 33 and 82 years, were interviewed. The interviews were analyzed using constant comparative analysis, which is the basis of grounded theory. The core category for the meaning and consequences of having the risk factors of MS consisted of the recurrence of behavior. The participants attempted to balance their insight into the causes and consequences by referring to their normal life, lifestyle, and fatalistic approach to life. Attention needs to be paid to the attitudes of the individuals with MS, as well as the known risk factors and their consequences, in order to facilitate a long-term lifestyle change in these individuals.

  • 93.
    Hollman Frisman, Gunilla
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Knowing about the metabolic syndrome, does it influence life?2008In: 8th Annual Spring Meeting on Cardiovascular Nursing, 2008Conference paper (Refereed)
  • 94.
    Hollman Frisman, Gunilla
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Knowing about the metabolic syndrome, does it influence life?2007In: A elebration event Med dr hc professor Afaf Meleis and Twenty years of Nursing Science., 2007Conference paper (Refereed)
  • 95.
    Hollman, G
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, C
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Ek, A-C
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Livskvalitet vid genetiskt ökad sjukdomsrisk2003Conference paper (Other academic)
  • 96.
    Hollman, Gunilla
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Knowing about the metabolic syndrome, does it influence life?2007Conference paper (Refereed)
  • 97.
    Hollman, Gunilla
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Living with the metabolic syndrome2006Conference paper (Refereed)
  • 98.
    Hollman, Gunilla
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Living with the metabolic syndrome2006In: The 2006 WENR Scientific Symposium, Obesity as a threat to health. How can nursing research contribute to prevention and care?, 2006Conference paper (Refereed)
  • 99.
    Hollman, Gunilla
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Ek, Anna-Christina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Livskvalitet vid genetiskt ökad sjukdomsrisk2003Conference paper (Refereed)
  • 100.
    Hollman, Gunilla
    et al.
    Linköping University, Department of Medicine and Care, Internal Medicine. Linköping University, Faculty of Health Sciences.
    Ek, Anna-Christina
    Linköping University, Department of Medicine and Care, Nursing Science. Linköping University, Faculty of Health Sciences.
    Olsson, Anders
    Linköping University, Department of Medicine and Care, Internal Medicine. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medicine and Care, Nursing Science. Linköping University, Faculty of Health Sciences.
    The meaning of quality of life among patients with familial hypercholesterolemia2004In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 19, no 4, p. 243-250Article in journal (Refereed)
    Abstract [en]

    Background: Living with a genetic predisposition to disease may influence quality of life. The presence of premature disease can lead to an increased focus on family history and genetic predisposition.

    Objective: The purpose of this study was to describe quality of life in patients with the genetic disease, familial hypercholesterolemia, who are at an increased risk of premature coronary heart disease.

    Methods: Interviews from 12 adult patients with FH were analyzed using constant comparative analysis. The findings of this qualitative study revealed that for patients, quality of life was equated with harmony in life, the core category. Attaining harmony in life presumes satisfaction and togetherness. Cognizance of the threat of coronary heart disease and impending mortality is balanced by the support of togetherness and satisfaction that builds harmony in life.

    Conclusion: When caring for patients with familial hypercholesterolemia, it is important to meet each patient on his or her own level, and to support balance and their choices for maintaining or regaining harmony in life.

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