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  • 1. Henriksson, A.
    et al.
    Andershed, B.
    Benzein, Eva
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness2012In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 7, p. 930-938Article in journal (Refereed)
    Abstract [en]

    Background: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving. Aim: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness. Design: Correlational. Setting/participants: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability. Results: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9. Conclusions: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture. © 2011 The Author(s).

  • 2. Henriksson, Anette
    et al.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study2013In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 27, no 7, p. 639-646Article in journal (Refereed)
    Abstract [en]

    Background: Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. Aim: The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. Design: This was a correlational study using a cross-sectional design. Setting/participants: The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Result: Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Conclusion: Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

  • 3. Henriksson, Anette
    et al.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ternestedt, Britt-Marie
    Andershed, Birgitta
    Effects of a support group programme for patients with life-threatening illness during ongoing palliative care2013In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 27, no 3, p. 257-264Article in journal (Refereed)
    Abstract [en]

    Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. Aim: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. Design: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. Settings/participants: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons. Results: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes. Conclusions: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

  • 4.
    Hommerberg, Charlotte
    et al.
    Linnaeus University, Faculty of Arts and Humanities, Department of Languages.
    Gustafsson, Anna W.
    Lund University.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Sandgren, Anna
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Semino, Elena
    Lancaster University.
    Koller, Veronika
    Lancaster University.
    Rendering the ungraspable graspable: the use of metaphors in Swedish palliative cancer care2016In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 30, no 6, p. NP364-NP364Article in journal (Other academic)
    Abstract [en]

    Good communication is of utmost importance in all forms of cancer care and especially so in the palliative context. To render the ungraspable graspable, metaphors are frequently used drawing on their capacity to capture the intangible in terms of more familiar experiences. For instance, to die from cancer can be described as ’coming to the end of a life journey’ or ’losing a battle’. Metaphors are largely language and culture specific. Today’s increasingly multicultural societies require particular awareness in order to achieve dignified, individualized palliative cancer care. This project aims to strengthen the scientific foundation for the use of metaphors in Swedish palliative cancer care. A secondary aim is to compare the use of metaphors in Sweden and the UK in order to reveal differences and similarities. Textual data are collected from

    1. a) internet-based blogs, where patients write about their illness-related emotions and experiences while being in palliative care, and from

    2. b) interviews with patients, family and health care professionals, where the focus is to investigate what it means to live a dignified life in palliative care.

    The two sets of data are analyzed using both qualitative and quantitative linguistic methods. First, the Pragglejaz procedure, a well-established linguistic method for metaphor identification, is used in order to manually identify metaphorical expressions in the material, develop analytic categories adapted to the Swedish language data and ensure inter-rater reliability. Second, the material is approached by means of corpus linguistic methods. The combination of research methods is inspired by the UK-based MELC project. The data are currently being processed and the first results will be presented at the conference. The project is funded by The Kamprad Family Foundation, Sweden.

  • 5.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College.
    Christiansen, Mats
    Karolinska Institutet.
    Ekstedt, Mirjam
    Ersta Sköndal University College ; KTH Royal Institute of Technology.
    Sandberg, Jonas
    Ersta Sköndal University College ; Jönköping University.
    Kenne Sarenmalm, Elisabeth
    Ersta Sköndal University College ; Skaraborg Hospital.
    Öhlén, Joakim
    Ersta Sköndal University College ; University of Gothenburg.
    Experience-based knowledge in the care of homeless people with severe illness and complex care needs2014In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 28, no 6, p. 789-789, article id P396Article in journal (Refereed)
    Abstract [en]

    Background: The number of homeless people in Sweden amounts to approximately 34 000. Of those about 4500 live in streets or shelters. The mortality rate among homeless people outnumbers other groups in the society. Often they have severe, multiple mental and physical illnesses, drug abuse and a variety of complex care needs, including palliative. From an international perspective, research related to care for homeless people with severe illness and complex care needs is very sparse (no Swedish studies have been identified). Among the few that have been found, challenges related to the homeless situation and the illness panorama are reported. From the perspective of the homeless persons themselves, studies report stigmatisation, lack of respect and competence among health-care professionals, and insufficient organisation of health care.

    Aim: The aim of this study is to explore the development of experience-based knowledge among health care professionals and social workers in a unique setting, in which advanced inpatient health -and social care, including palliative care is provided to homeless people.

    Methods: In this on-going qualitative case-study, clinically relevant and applicable knowledge is focused. Repeated focus group discussions and coupled thematic interviews were performed with staff (physicians, social workers, mental carers, nurses). Analysis is performed with an interpretive descriptive method.

    Results and implication: The results, which are currently being processed, will present staffs’ experiences of identification and assessment of individual care needs, specific knowledge development and requirement in relation to palliative care and homelessness, and challenges, obstacles and opportunities for meeting the needs of severely ill and dying homeless people. The results will provide knowledge of importance for the development of care for severely ill homeless persons.

  • 6.
    Moellerberg, Marie-Louise
    et al.
    Skåne University Hospital, Sweden.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Council, Sweden.
    Swahnberg, Katarina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Sandgren, Anna
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Family sense of coherence and its associations with hope, anxiety and symptoms of depression in persons with cancer in palliative phase and their family members: A cross-sectional study2019In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030XArticle in journal (Refereed)
    Abstract [en]

    Background: There is evidence indicating that family sense of coherence predicts quality of family life and promotes family well-being. In families living with the palliative phase of cancer, low hope, anxiety and symptoms of depression are common in both persons with cancer and their family members. Aim: To determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression, respectively, in persons with cancer in the palliative phase and their family members. Design: An observational, cross-sectional, multicentre study was conducted. Nested linear regression analyses were performed in two blocks to determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression. Setting/participants: Persons with cancer (n = 179) and their family members (n = 165) were recruited from two oncology clinics and two palliative centres in three regions in Sweden. Results: The main findings showed that family sense of coherence was significantly and independently associated with hope, anxiety and symptoms of depression. Stronger family sense of coherence was associated with higher hope and lower anxiety and symptoms of depression levels in both persons with cancer and their family members. Conclusion: Health care providers should strive to identify families with weak family sense of coherence, because of its associations with hope, anxiety and symptoms of depression, in order to offer them professional support and thereby achieve increased well-being during the palliative phase of cancer. Future studies should expand our knowledge of family sense of coherence and how to identify families at risk of lower levels of well-being.

  • 7.
    Persson, Carina
    et al.
    Neurobiologi, vårdvetenskap och samhälle.
    Ostlund, U
    Wennman-Larsen, A
    Wengström, Y
    Gustavsson, P
    Health-related quality of life in significant others of patients dying from lung cancer.2008In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 22, no 3, p. 239-47Article in journal (Refereed)
    Abstract [en]

    This study compares health-related quality of life (HRQOL) in significant others of patients dying from lung cancer, with a general population sample. Further, it explores the course of HRQOL from diagnosis (T1), at a time point close to the patient's death (T2), and six months after the patient's death (T3). The group comparisons at T1 showed that the significant others scored significantly lower on the scales in the mental domain compared with a general population sample. These results were the same at T3, when the significant others also scored lower on most of the scales in the physical and social domains. In the longitudinal analyses, there were significant changes in four scales, and three patterns of change were identified: a decrease-increase pattern for 'self-rated health' and 'positive affect'; a constant decrease pattern for 'family functioning'; and a decrease-stable pattern for 'satisfaction with family functioning'. Thus, living with inoperable lung cancer in the family and then facing the death of a family member affects most of the HRQOL dimensions.

  • 8.
    Thulesius, Hans
    et al.
    Region Kronoberg.
    Petersson, Christer
    Petersson, Kerstin
    Håkansson, Anders
    Learner-centred education in end-of-life care improved well being in home care staff: a prospective controlled study.2002In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 16, no 4, p. 347-54Article in journal (Refereed)
    Abstract [en]

    The aim of this controlled study was to evaluate a 1-year learner-centred educational project in end-of-life care for home care staff in a rural district of Sweden. Another rural district in the same region served as a control area. A 20-item questionnaire measuring attitudes towards end-of-life care was designed, and the Hospital Anxiety and Depression (HAD) scale was used to measure mental well being. Increased agreement to 18 of 20 attitude statements was seen in the education group, while 2 of 20 items showed a decreased agreement in the control group. Test-retest reliability of the 20-item questionnaire was good (r=0.92). The total HAD score decreased from 8.3 pretest to 5.3 post-test in the education group (95% CI = 2.1 -3.7; P<0.001), and was 6.8 for both years in the control group. Our study shows that a comprehensive educational programme not only improved attitudes towards end-of-life care, but also the mental well being of the home care staff.

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