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  • 1.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Klang, Birgitta
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Jacobson, Stefan H
    Andreassen Gleissman, Sissel
    Sophiahemmet University.
    End of life of patients treated with haemodialysis as narrated by their close relatives2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, p. 776-784Article in journal (Refereed)
    Abstract [en]

    AIM: The study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives.

    INTRODUCTION: Many patients undergoing haemodialysis are older, have several comorbidities and underestimated symptoms and are in their last year of life. To improve care, we need to know more about their end-of-life situation.

    DESIGN: Qualitative and descriptive.

    METHODS: Qualitative retrospective interviews were conducted with 14 close relatives of deceased haemodialysis patients (3-13 months after death). Data were analysed using qualitative content analysis. The study is ethically approved.

    FINDINGS: In the last months, a gradual deterioration in health with acute episodes necessitating hospital admissions was described. This involved diminishing living space and expressions of dejection, but also of joy. Three patterns emerged in the last weeks: uncertain anticipation of death as life fades away; awaiting death after haemodialysis withdrawal; and sudden but not unexpected death following intensive care. Findings show complexities of decisions on haemodialysis withdrawal.

    CONCLUSIONS: Different end-of-life patterns all involved increasingly complex care needs and existential issues. Findings show a need for earlier care planning. The identification of organisational factors to facilitate continuity and whole person care to meet these patients' specific care needs with their complex symptom burdens and comorbidities is needed. Findings indicate the need for integration of a palliative care approach in the treatment of patients in haemodialysis care.

  • 2.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Randers, Ingrid
    Sophiahemmet University.
    Jacobson, Stefan H
    Klang, Birgitta
    Living with haemodialysis when nearing end of life2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 1, p. 45-52Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: The aim of this study was to describe and to elucidate the meanings of being severely ill living with haemodialysis when nearing end of life.

    INTRODUCTION: To have end stage renal disease and to be treated with maintenance haemodialysis implies being dependent on lifelong treatment. Several studies have reported that these patients suffer a high symptom burden and an impaired quality of life due to both disease and treatment. In the dialysis unit, where the focus is on handling technology and maintaining life, end of life care may be neglected or overlooked. Nevertheless, mortality rates show that about one-fourth of patients in haemodialysis care are in their last year of life.

    DESIGN: A qualitative interpretative design was used.

    METHODS: Serial qualitative interviews over a period of 12 months were conducted with eight patients (aged 66-87). Altogether text of 31 interviews was interpreted using a phenomenological hermeneutical method in three phases. The study is ethically approved.

    FINDINGS: The structural analysis resulted in 11 subthemes and thereafter the following three themes were formulated; being subordinate to the deteriorating body, changing outlook on life and striving for upheld dignity. The comprehensive interpretation revealed that being severely ill living with haemodialysis near the end of life means living with suffering simultaneously with reconciliation and well-being. Further, the meanings are understood as intertwined with being old.

    CONCLUSIONS: Findings contribute to an increased awareness of the complexities of these patients' life worlds and their meanings, and thus of the importance to listen to their experiences and their understandings. Findings suggest that to integrate the philosophy of palliative care in haemodialysis units may improve care for patients who are living with haemodialysis and approaching the end of their lives.

  • 3.
    Carlsson, Tommy
    Sophiahemmet University.
    Management of physical pain during induced second-trimester medical abortions: a cross-sectional study of methodological quality and recommendations in local clinical practice guidelines at Swedish hospitals.2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed)
    Abstract [en]

    AIM: The aim was to assess the methodological quality and describe recommendations for pain management in local clinical practice guidelines about induced second-trimester medical abortions at Swedish university and county hospitals.

    METHODS: In 2017, Swedish university and county hospitals that provided abortion care in the second trimester of pregnancy were contacted (n = 29), and guidelines from 25 were received (university: n = 6, county: n = 19). Guideline quality was assessed according to two systematic instruments. Recommendations were systematically assessed regarding frequency and tools for pain measurement, prophylactic pharmacologic treatment, as needed pharmacologic treatment and nonpharmacologic treatment.

    RESULTS: Overall methodological quality was poor across both instruments, as the majority of the guidelines did not fulfil the investigated quality criteria. For pain measurements, no guideline recommended measurement frequency and four recommended specific measurement tools. Prophylactic pharmacologic treatment, described in 23 (92%) guidelines, included paracetamol (n = 23, 92%), anti-inflammatory drugs (n = 23, 92%) and opioids (n = 18, 72%). As needed pharmacologic treatment, described in 23 (92%) guidelines, included anaesthetics (n = 21, 84%), opioids (n = 21, 84%) and paracetamol (n = 1, 4%). Recommendations for as needed anaesthetics included paracervical block (n = 21, 84%), epidural analgesia (n = 16, 64%) and inhalation of nitrous oxide (n = 5, 20%). Nonpharmacologic treatments were recommended in nine (36%) guidelines.

    CONCLUSIONS: The findings indicate that local clinical practice guidelines about induced second-trimester medical abortions are of inadequate methodological quality and that a large majority lack recommendations concerning systematic pain measurements. Although most recommend prophylactic and as needed pharmacologic management, national inconsistencies exist in Sweden with regard to recommendations of epidural analgesia, nitrous oxide and nonpharmacologic methods. In Sweden, there is room for improvement in the development of these guidelines.

  • 4.
    Craftman, Åsa
    et al.
    Sophiahemmet University.
    Westerbotn, Margareta
    Sophiahemmet University.
    von Strauss, Eva
    Hillerås, Pernilla
    Sophiahemmet University.
    Marmstål Hammar, Lena
    Older people's experience of utilisation and administration of medicines in a health- and social care context2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, p. 760-768Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care.

    AIM: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care.

    DESIGN: A qualitative descriptive study.

    METHODS: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used.

    FINDINGS: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process.

    CONCLUSIONS: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine.

    RELEVANCE TO CLINICAL PRACTICE: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health- and social care delivery is efficient and improve outcome for the recipient of care.

  • 5. Ericson-Lidman, Eva
    et al.
    Franklin Larsson, Lise-Lotte
    Sophiahemmet University.
    Norberg, Astrid
    Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 2, p. 337-346Article in journal (Refereed)
    Abstract [en]

    Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person-centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two-edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health.

  • 6.
    Georgsson Öhman, Susanne
    et al.
    Sophiahemmet University.
    Grunewald, Charlotta
    Waldenström, Ulla
    Women's worries during pregnancy: testing the Cambridge Worry Scale on 200 Swedish women2003In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 17, no 2, p. 148-52Article in journal (Refereed)
    Abstract [en]

    The Cambridge Worry Scale (CWS) is an instrument including 16 items measuring women's major worries during pregnancy. The aim of the study was to test the scale, translated into Swedish, on pregnant women in Stockholm. We also wanted to explore whether these women were worried about any item not included in the scale. An additional aim was to study possible variation in women's worries related to gestational week. Two hundred women were recruited. The average age was 31 years and 56% were primiparas. Gestational age ranged from 8 to 42 weeks, with a median of 28 weeks. The reliability of the scale was satisfactory (Cronbach's alpha coefficient 0.81). The major worries were about the baby's health, giving birth and miscarriage. These items, all related to pregnancy outcomes, were followed by worries about financial matters. An additional concern not included in the scale was about the maternity services in Stockholm, i.e. that the hospital would be overbooked, the staff being too busy or the medical safety not being guaranteed. Few women worried about their relationship with their partner or if he would be present at birth. Some of the items showed a pattern with a period of less worry in midpregnancy.

  • 7. Henoch, Ingela
    et al.
    Carlander, Ida
    Holm, Maja
    James, Inger
    Kenne Sarenmalm, Elisabeth
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Lind, Susanne
    Sandgren, Anna
    Öhlén, Joakim
    Palliative Care Research - A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 20122016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 1, p. 5-25Article, review/survey (Refereed)
    Abstract [en]

    BACKGROUND: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.

    METHODS: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.

    RESULTS: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.

    CONCLUSIONS: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.

  • 8. Medin, Jörgen
    et al.
    Larson, Jenny
    von Arbin, Magnus
    Wredling, Regina
    Sophiahemmet University College.
    Tham, Kerstin
    Striving for control in eating situations after stroke2010In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 24, no 4, p. 772-80Article in journal (Refereed)
    Abstract [en]

    UNLABELLED: THE STUDY'S RATIONALE: Eating difficulties are common after stroke. However, to better meet individuals' needs, in terms of care, support and rehabilitation after stroke, it was considered important to know more about how patients with stroke experience their eating difficulties while in process of regaining their ability.

    AIMS AND OBJECTIVES: The aim of this study was to explore the experience of eating difficulties among patients with stroke 3 months after stroke onset. METHODOLOGICAL DESIGN AND JUSTIFICATION: A qualitative interpretive descriptive approach was used. The analysis was based on constant comparative approach, using the principles of grounded theory.

    RESEARCH METHODS: The study included 14 participants with stroke and eating difficulties. A semi-structured interview guide with open-ended questions and probes was used. The interview guide was gradually modified during the data collection process. The interviews were digital audio recorded and fully transcribed. Memos were documented simultaneously with the analysis. Instruments:  A structured observation of a meal verified eating difficulties, and semi-structured interviews were conducted.

    RESULTS: 'Striving for control' emerged as a tentative core category. The participants related their striving for control to 'eating safely', and 'eating properly'; they also had to analyse the consequences of their eating difficulties, being careful when eating, and/or avoiding activities. Some also felt a need of help from others. Those others could remind and provide advice in this matter.

    CONCLUSION: This study highlights the complexity of having eating difficulties after stroke. Aspects related to the participants' striving for control are based on different strategies to eat safely and properly. Nurses can use this knowledge to support patients in their strive for control by observing them in eating situations. In addition, nurses can also ask them to describe and make explicit the experience of eating situations after stroke.

  • 9.
    Nahlén Bose, Catarina
    et al.
    Sophiahemmet University.
    Elfström, Magnus L
    Björling, Gunilla
    Persson, Hans
    Saboonchi, Fredrik
    Patterns and the mediating role of avoidant coping style and illness perception on anxiety and depression in patients with chronic heart failure2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 4, p. 704-713Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Emotional distress in patients with chronic heart failure (CHF) predicts mortality, hospital readmission and quality of life. The patient's avoidant coping style and beliefs about the disease have been linked to emotional distress in CHF. However, the pattern and transmitting effects of these variables are indefinite.

    AIM: This study aimed to examine the links between and the potential mediating role of illness perceptions and avoidant coping style on depression and anxiety in patients with CHF.

    METHOD: Self-assessment data from 103 patients with CHF were subjected to path analysis in two hypothesised models. The outcome measures were coping styles, illness perception, anxiety and depression.

    RESULTS: Avoidant coping had a direct adverse effect on anxiety and depression. The perception of symptom burden and personal control, significantly mediated the effect between avoidant coping and anxiety and depression.

    CONCLUSIONS: Avoidant coping style appears to influence not only emotional distress, but also a malignant symptom perception and low sense of control over the illness.

  • 10. O'Sullivan, Anna
    et al.
    Öhlen, Joakim
    Alvariza, Anette
    Håkanson, Cecilia
    Sophiahemmet University.
    Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.

    METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.

    RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.

    SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.

  • 11. Petersson, Lena-Marie
    et al.
    Vaez, Marjan
    Nilsson, Marie I
    Saboonchi, Fredrik
    Alexanderson, Kristina
    Olsson, Mariann
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Sickness absence following breast cancer surgery: a two-year follow-up cohort study2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 2, p. 715-724Article in journal (Refereed)
    Abstract [en]

    RATIONALE AND AIM: Most women of working ages with limited breast cancer (BC) have returned to work within the first year after diagnosis. However, little is known about what is happening during this year regarding sickness absence and return to work. Also, the knowledge is very limited about the occurrence of part-time sickness absence after BC diagnosis. Therefore, the aim of this study was to describe occurrence, extent and length of SA during a two-year follow-up after BC surgery and to analyse the association between being SA and type of cancer treatment.

    METHODS: In this prospective cohort study, 497 women responded to questionnaires about different aspects of sickness absence at six occasions during two years after primary BC surgery (at baseline and after 4, 8, 12, 18 and 24 months). Treatment information was obtained from the National breast cancer register. Multinomial logistic regression was used to calculate odds ratios (OR) for likelihood of being sickness absent more than once.

    RESULTS: Two-thirds of the women were sickness absent at baseline; this proportion decreased, especially during the first eight months. At 24 months, 13% were sickness absent. Of all women, 27% never reported sickness absence and 14% were sickness absent at most of the six survey times. At eight months, many had shifted from full- to part-time sickness absence. Women with chemotherapy and/or advanced BC surgery had higher ORs for being sickness absent at most of the follow-ups.

    CONCLUSIONS: Most women returned to work within the first eight months after BC surgery and of those sickness absent after that, most had been part-time sickness absent. Thus, it is important to differentiate between part- and full-time sickness absence in future studies. Special attention should be paid to the impact of chemotherapy and type of surgery on the likelihood of being sickness absent.

  • 12.
    Siouta, Eleni
    et al.
    Sophiahemmet University.
    Hellström Muhli, Ulla
    Hedberg, Berith
    Broström, Anders
    Fossum, Bjöörn
    Sophiahemmet University.
    Karlgren, Klas
    Patients' experiences of communication and involvement in decision-making about atrial fibrillation treatment in consultations with nurses and physicians2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 3, p. 535-46Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Insights in consultations across patient interactions with physicians and nurses are of vital importance for strengthening the patients' involvement in the treatment decision-making process. The experience of involvement and communication in decision-making from the patients' perspective has been sparsely explored.

    OBJECTIVE: To examine how patients describe involvement in and communication about decision-making regarding treatment in consultations with nurses and physicians.

    METHOD: Twenty-two patients with atrial fibrillation (AF), aged 37-90 years, were interviewed directly after their consultations with nurses and physicians in outpatient AF clinics in six Swedish hospitals.

    RESULTS: In consultations with nurses, the patients felt involved when obtaining clarifications about AF as a disease and its treatment and when preparing for and building up confidence in decision-making. In consultations with physicians, the patients felt involved when they could cooperate in decision-making, when acquiring knowledge, and when they felt that they were being understood. One shared category was found in consultations with both nurses and physicians, and the patients felt involved when they had a sense of trust and felt secure during and between consultations.

    CONCLUSIONS: Patients with AF stated that they would need to acquire knowledge and build up confidence and ability in order to be effectively involved in the decision-making about treatment. Despite not being actively involved in decision-making, patients felt involved through experiencing supportive and confirming communication.

    PRACTICE IMPLICATIONS: Attention must be given to the relationship with the patient to create the conditions for patient involvement in the consultation. This can be achieved through supportive communication attempting to create a feeling of clarity and building confidence. This will support involvement in decision-making concerning AF treatment and feelings of being understood and of trust in physicians and/or nurses.

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