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  • 101.
    Norberg, Astrid
    et al.
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Zingmark, Karin
    Att leva med långt framskriden demenssjukdom2011In: Att möta personer med demens / [ed] Edberg, Anna-Karin, Studentlitteratur, 2011, 2, p. 35-53Chapter in book (Other academic)
  • 102.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Konrad Marc-Wogau: en livsresa från Moskva till Uppsala2015Book (Other (popular science, discussion, etc.))
  • 103. Nässtrom, Lena
    et al.
    Jaarsma, Tiny
    Idvall, Ewa
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Linnéuniversitetet.
    Strömberg, Anna
    Patient participation in patients with heart failure receiving structured home care: a prospective longitudinal study2014In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 14, p. 633-Article in journal (Refereed)
    Abstract [en]

    Background: Patient participation is important for improving outcomes, respect for self-determination and legal aspects in care. However, how patients with heart failure view participation and which factors may be associated with participation is not known. The aim of this study was therefore to describe the influence of structured home care on patient participation over time in patients diagnosed with heart failure, and to explore factors associated with participation in care.

    Methods: The study had a prospective pre-post longitudinal design evaluating the influence of structured home care on participation in patients at four different home care units. Patient participation was measured using 3 scales and 1 single item. Self-care behavior, knowledge, symptoms of depression, socio-demographic and clinical characteristics were measured to explore factors associated with patient participation. Repeated measure ANOVA was used to describe change over time, and stepwise regression analyses were used to explore factors associated with patient participation.

    Results: One hundred patients receiving structured heart failure home care were included. Mean age was 82 years, 38 were women and 80 were in New York Heart Association functional class III. One aspect of participation, received information, showed a significant change over time and had increased at both six and twelve months. Better self-care behavior was associated with all four scales measuring different aspects of participation. Experiencing lower degree of symptoms of depression, having better knowledge, being of male sex, being of lower age, cohabiting and having home help services were associated with one or two of the four scales measuring different aspects of participation.

    Conclusion: Patients experienced a fairly high level of satisfaction with participation in care at baseline, and there was a significant improvement over time for participation with regard to received information after being admitted to structured home care. Higher level of patient participation was consistently associated with better self-care behavior. This study shows that patient participation may need to be further focused upon, and that the association with self-care may be interesting to target in future interventions.

  • 104.
    Oresland, Stina
    et al.
    Buskerud University College.
    Lutzen, Kim
    Karolinska institutet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Umeå universitet.
    Rasmussen, Birgit H.
    Karolinska institutet.
    Määttä, Sylvia
    Göteborgs universitet.
    Nurses as ’guests’: a study of a concept in light of Jacques Derrida’s philosophy of hospitality2013In: Nursing Philosophy, ISSN 1466-7681, E-ISSN 1466-769X, Vol. 14, no 2, p. 117-126Article in journal (Refereed)
    Abstract [en]

    As revealed in previous empirical research, nurses describe their position in home-based nursing care (HBNC) as that of ‘guests’ in the patient's home. Such a description is problematic as ‘guests’ might not be considered to belong to the realm of professionalism. As Jacques Derrida's work on hospitality has received wide publicity, sparking theoretical and philosophical discussion about host and guest, the aim of this study was to explore how the concept ‘guests’ can be understood in the light of Derrida's philosophy of hospitality. The study revealed that (a) guest must be considered a binary concept; and (b) hospitality should be regarded as an exchange of giving and receiving between a host and a guest. The present study demonstrated that it is important to reflect on the meaning of the concepts used by nurses in HBNC. Further theoretical and empirical exploration of the concept ‘hospitality’ would be fruitful, i.e. what is patients' understanding of ‘hospitality’ and ‘hostility’ related to nurses' descriptions of themselves as ‘guests’ in the patient's home.

  • 105. Palmetun Edback, Maria
    et al.
    Lindberg, Magnus
    Benzein, Eva
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Linnéuniversitetet.
    Social support: an important factor for quality of life in women with hirsutism2014In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 12, p. 183-Article in journal (Refereed)
    Abstract [en]

    Background: Women with hirsutism have reported imparied health and health-related quality of life (HRQoL). Social support is a factor that might increase HRQoL in chronic diseases, but little is known about this association among women with hirsutism.

    Aim: The aim of the study was to describe social support and explore its association with HRQoL among women with hirsutism. A further aim was to compare HRQoL in women with hirsutism with a Swedish normal population.

    Methods: A questionnaire including socio-demographic questions, Short-Form Health Survey (SF-36), the Multidimensional Scale of Perceived Social Support (MSPSS), and a self-estimation of hairiness using the Ferriman-Gallway scale (F-G scale) was answered by 127 women with hirsutism.

    Results: Multiple regression analyses showed significant associations between social support and all health dimensions in the SF-36, also after the model was adjusted for age, hairiness and body mass index. Compared to the normal Swedish population, women with hirsutism reported significantly lower HRQoL in all dimensions of the SF-36 (p < 0.01).

    Conclusions: There is a significant positive association between social support and HRQoL, demonstrating its importance for the ability to adapt to problems associated with hirsutism. As women with hirsutism reported poorer HRQoL compared to the normal population, social support may be a factor to consider in clinical practice.

  • 106.
    Pennbrant, S
    et al.
    University West, Dept. of Nursing, Health & Culture.
    Nilsson, MS
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Göteborgs universitet.
    Rudman, A
    Mastering the professional role as a newly graduated registered nurse2013In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 33, no 7, p. 739-45Article in journal (Refereed)
  • 107.
    Sahlberg-Blom, Eva
    et al.
    Örebro universitet.
    Hårsmar, Anna-Lena
    Brickegårdens primärvårdscenter.
    Österlind, Jane
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Palliative Research Centre, PRC.
    Assistant nurses’ descriptions of signs of dying among older people in nursing homes2013In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 33, no 1, p. 20-24Article in journal (Refereed)
  • 108.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Eriksson, Henrik
    Makt, genus och identitet2013In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt & Cecilia Håkanson, Lund: Studentlitteratur, 2013, p. 61-69Chapter in book (Other academic)
  • 109. Santamäki Fischer, Regina
    et al.
    Lundman, Berit
    Gustafson, Yngve
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Vård och omsorg för ett gott åldrande2012In: Det goda åldrandet / [ed] Astrid Norberg, Berit Lundman, Regina Santamäki Fischer, Lund: Studentlitteratur, 2012, 1, p. 259-272Chapter in book (Other academic)
  • 110.
    Santamäki, Regina
    et al.
    Umeå universitet.
    Lundman, Berit
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Umeå universitet.
    Feeling whole: The meaning of being consoled narrated by very old people2010In: The Journal of Pastoral Care & Counseling, ISSN 1542-3050, Vol. 64, no 1, p. 1-12Article in journal (Refereed)
    Abstract [en]

    Interviews with 13 people, over 85 years, with high scored Self-transcendence, were analyzed using a phenomenological hermeneutic method. The meaning of being consoled was interpreted to Feeling whole, an immediate experience of: being carried and embraced by God (Feeling connected to God), supported by the loving care and affection from others (Feeling connected to fellow beings and the world), being relaxed, peaceful and full of joy and experiencing hope (Being connected to self).

  • 111. Schildmeijer, Kristina
    et al.
    Nilsson, Lena
    Perk, Joep
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Linnéuniversitetet.
    Nilsson, Gunilla
    Strengths and weaknesses of working with the Global Trigger Tool method for retrospective record review: focus group interviews with team members2013In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 3, no 9, p. e003131-Article in journal (Refereed)
    Abstract [en]

    Objectives: The aim was to describe the strengths and weaknesses, from team member perspectives, of working with the Global Trigger Tool (GTT) method of retrospective record review to identify adverse events causing patient harm.

    Design: A qualitative, descriptive approach with focus group interviews using content analysis.

    Setting: 5 Swedish hospitals in 2011.

    Participants: 5 GTT teams, with 5 physicians and 11 registered nurses.

    Intervention: 5 focus group interviews were carried out with the five teams. Interviews were taped and transcribed verbatim.

    Results: 8 categories emerged relating to the strengths and weaknesses of the GTT method. The categories found were: Usefulness of the GTT, Application of the GTT, Triggers, Preventability of harm, Team composition, Team tasks, Team members' knowledge development and Documentation. Gradually, changes in the methodology were made by the teams, for example, the teams reported how the registered nurses divided up the charts into two sets, each being read respectively. The teams described the method as important and well functioning. Not only the most important, but also the most difficult, was the task of bringing the results back to the clinic. The teams found it easier to discuss findings at their own clinics.

    Conclusions: The GTT method functions well for identifying adverse events and is strengthened by its adaptability to different specialties. However, small, gradual methodological changes together with continuingly developed expertise and adaption to looking at harm from a patient's perspective may contribute to large differences in assessment over time.

  • 112.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Betydelsen av mjuk massage2013In: Palliativ vård: begrepp & perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkanson, Lund: Studentlitteratur AB, 2013, p. 443-451Chapter in book (Other academic)
  • 113.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Massage och beröring i palliativ omvårdnad2012In: Palliativ medicin och vård / [ed] Peter Strang, Barbro Beck-Friis, Stockholm: Liber, 2012, 4 rev., p. 300-305Chapter in book (Refereed)
  • 114.
    Seiger- Cronfalk, Berit
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska Institutet, Stockholm, Sweden, Stord Haugesund University College, Haugesund, Norway.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska Institutet, Stockholm, Sweden .
    Franklin Larsson, Lise-Lotte
    Ersta Sköndal University College, Palliative Research Centre, PRC. Sophiahemmet University College, Stockholm, Sweden.
    Henriksen, Eva
    Stockholm County Council, Research and Development FOUnu, Stockholm, Sweden.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå University, Sweden.
    Österlind, Jane
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Utilization of palliative care principles in nursing home care: Educational interventions2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1745-1753Article in journal (Refereed)
    Abstract [en]

    Objective: This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care.

    Method: Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used.

    Results: The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people.

    Significance of results: Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.

  • 115. Seiger, Åke
    et al.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Palliativ vård i förändring: Exempel på svenska utvecklingsprojekt2013In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 30, no 2, p. 13-17Article in journal (Refereed)
  • 116. Skaalvik, MW
    et al.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Norrmann, K
    Fjelltun, AM
    Asplund, K
    The experience of self and threats to sense of self among relatives caring for people with Alzheimer's disease2014In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850Article in journal (Refereed)
  • 117. Smith, Frida
    et al.
    Carlsson, Eva
    Kokkinakis, Dimitrios
    Forsberg, Markus
    Kodeda, Karl
    Sawatzky, Richard
    Friberg, Febe
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Readability, suitability and comprehensibility in patient education materials for Swedish patients with colorectal cancer undergoing elective surgery: a mixed method design2014In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 94, no 2, p. 202-209Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To characterize education materials provided to patients undergoing colorectal cancer surgery to gain a better understanding of how to design readable, suitable, comprehensible materials.

    METHOD: Mixed method design. Deductive quantitative analysis using a validated suitability and comprehensibility assessment instrument (SAM+CAM) was applied to patient education materials from 27 Swedish hospitals, supplemented by language technology analysis and deductive and inductive analysis of data from focus groups involving 15 former patients.

    RESULTS: Of 125 patient education materials used during the colorectal cancer surgery process, 13.6% were rated 'not suitable', 76.8% 'adequate' and 9.6% 'superior'. Professionally developed stoma care brochures were rated 'superior' and 44% of discharge brochures were 'not suitable'. Language technology analysis showed that up to 29% of materials were difficult to comprehend. Focus group analysis revealed additional areas that needed to be included in patient education materials: general and personal care, personal implications, internet, significant others, accessibility to healthcare, usability, trustworthiness and patient support groups.

    CONCLUSION: Most of the patient education materials were rated 'adequate' but did not meet the information needs of patients entirely. Discharge brochures particularly require improvement.

    PRACTICE IMPLICATIONS: Using patients' knowledge and integrating manual and automated methods could result in more appropriate patient education materials.

  • 118.
    Strang, Susann
    et al.
    Göteborgs universitet.
    Berg, Ingrid
    Högskolan i Skövde.
    Ek, Kristina
    Högskolan i Skövde.
    Hammarlund, Kina
    Högskolan i Skövde.
    Prahl, Charlotte
    Ersta Sköndal University College, Department of Health Care Sciences.
    Westin, Lars
    Högskolan i Skövde.
    Österlind, Jane
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet.
    Swedish nursing students´ reasoning about emotionally demanding issues in caring for dying patients2014In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 20, no 4, p. 194-200Article in journal (Refereed)
  • 119.
    Sveen, Josefin
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Melcher, Ulrica
    Ersta sjukhus, Hospicekliniken, Stockholm.
    Alvariza, Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Capio Palliativ vård Dalens sjukhus, Stockholm, Karolinska institutet, Stockholm.
    Teenagers' reasoning about a parent's recent death in cancer2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 4, p. 349-357Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of the study was to explore how teenagers reason about a parent's recent death and about their life without that parent.

    Method: A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) were interviewed twice, 3–12 months after their parent's death. The interviews were carried out individually and as free-ranging conversations. A content analysis with a descriptive and interpretive design was conducted.

    Results: Importantly, all teenagers appreciated participating in the interviews. Some had not previously talked in such depth about this with anyone, while others had more open communications within their families and with others. Their parent's death was the worst thing that could happen, but they still expressed the feeling that it had been a relief for both the ill parent and themselves. The death had relieved the parent from suffering and a life with severe illness. Many of the teenagers empathized with the surviving parent's grief and worried about him or her as well as the entire home situation. As a consequence, the teenagers did not show their grief, as they did not want to burden the grieving parent. Seeing the parent grieving could lead to feelings of loneliness and hopelessness and that the support they needed was not there for them. Nevertheless, some teenagers could grieve together with the surviving parent in common understanding and with openness.

    Significance of Results: A tentative conclusion is that the teenagers who were more likely to talk and grieve together with their surviving parent coped better with their situation than teenagers who did not. Parentally bereaved teenagers tend to take on a responsibility to support the grieving parent, when it is they themselves who need and should receive support.

  • 120.
    Söderlund, Mona
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Cronqvist, Agneta
    Ersta Sköndal University College, Department of Health Care Sciences.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Palliative Research Centre, PRC.
    Conversations between residents with dementia disease and nurses: evaluation of an intervention with the Validation methodManuscript (preprint) (Other academic)
  • 121.
    Söderlund, Mona
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Cronqvist, Agneta
    Ersta Sköndal University College, Department of Health Care Sciences.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Umeå universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska Institutet, Stockholm Sjukhem.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Conversations between persons with dementia disease living in nursing homes and nurses: qualitative evaluation of an intervention with the validation method2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, p. 37-47Article in journal (Refereed)
    Abstract [en]

    Living with dementia disease (DD) can include difficulties describing experiences of everyday lives, which can lead to withdrawal, social isolation or existential homelessness. Persons with DD living in nursing homes are mainly dependent on the nurses for establishing and maintaining relationships with those around them. It can be challenging for nurses to understand what a person with DD is trying to express and to make themselves understood in turn. The validation method is intended to facilitate communication with persons with DD, but to our knowledge, there have been no qualitative studies of how this influences persons’ communication. This study aimed to illuminate the actions and reactions of persons with DD living in nursing homes in one-to-one conversations with nurses during 1 year of validation method training, as observed in videotapes. Four persons with DD were involved in videotaped conversations with four nurses who were participating in a validation method training programme. Videotapes with at least 5 months between the first and last recording were analysed and compared qualitatively. The findings are presented in four categories that were identified to various degrees in conversations at the beginning and at the end of the programme: being uninterested in or unable to answer questions, talking about more than one topic of conversation at the same time, trying to talk about what is on one’s mind and speaking more freely about what is on one’s mind. In the videotaped conversations at the end of the programme, the persons had the opportunity to use their remaining communication abilities. This may have been related to the development of the nurses’ communication skills during the training programme, and so it is possible that persons with DD could benefit from communicating with nurses trained in the validation method.

  • 122. Sørbye, Liv W
    et al.
    Hamran, Torunn
    Henriksen, Nils
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Umeå universitet.
    Home care patients in four Nordic capitals: predictors of nursing home admission during one-year followup2010In: Journal of Multidisciplinary Healthcare, ISSN 1178-2390, E-ISSN 1178-2390, Vol. 3, p. 11-18Article in journal (Refereed)
    Abstract [en]

    The aim was to predict nursing home admission (NHA) for home care patients after a 12-month follow-up study. This Nordic study is derived from the aged in home care (AdHOC) project conducted in 2001–2003 with patients at 11 sites in Europe. The participants in the cohort study were randomly selected individuals, aged 65 years or older, receiving homecare in Oslo, Stockholm, Copenhagen, and Reykjavik. The Resident Assessment Instrument for Home Care (version 2.0) was used. Epidemiological and medical characteristics of patients and service utilization were recorded for 1508 home care patients (participation rate 74%). In this sample 75% were female. The mean age was 82.1 (6.9) years for men and 84.0 (6.6) for women. The most consistent predictor of NHA was receiving skilled nursing procedures at baseline (help with medication and injections, administration or help with oxygen, intravenous, catheter and stoma care, wounds and skin care) (adjusted odds ratio = 3.7, 95% confidence interval: 1.7–7.8; P < 0.001). In this Nordic material, stronger emphasizing on higher qualified nurses in a home care setting could prevent or delay NHA.

  • 123.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Den sista tiden i livet: Äldres döende och död2012In: Dröm och mardröm: En antologi om friska seniorer och beroende gamlingar / [ed] Lars Jederlund, Stockholm: Vårdförbundet , 2012Chapter in book (Other academic)
  • 124.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Döden i samhället2013In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkansson, Lund: Studentlitteratur AB, 2013, p. 35-46Chapter in book (Other academic)
  • 125.
    Ternestedt, Britt-Marie
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Andershed, Birgitta
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Den palliativa vårdens utveckling2013In: Palliativ vård: begrepp & perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkanson, Lund: Studentlitteratur AB, 2013, 1, p. 103-116Chapter in book (Other academic)
  • 126.
    Ternestedt, Britt-Marie
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Identitet2013In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkansson, Lund: Studentlitteratur, 2013, p. 165-184Chapter in book (Other academic)
  • 127.
    Ternestedt, Britt-Marie
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Omvårdnad ur livscykelperspektiv – identitetens betydelse2014In: Omvårdnadens grunder: perspektiv och förhållningssätt / [ed] Febe Friberg, Joakim Öhlén, Lund: Studentlitteratur AB, 2014, 2, p. 33-68Chapter in book (Other academic)
  • 128. Ventura, F
    et al.
    Sawatzky, Richard
    Trinity Western University & University of British Columbia .
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Karlsson, P
    Göteborgs universitet, Inst vårdvetenskap och hälsa, Sahlgrenska akademin.
    Koinberg, I
    Evaluation of a Web-based Educational Program for Women Diagnosed with Breast Cancer: Why is the Intervention Effect Absent?2013Conference paper (Refereed)
  • 129.
    Ventura, F
    et al.
    University of Gothenburg, Sahlgrenska Academy, Institute of Health & Care Sciences.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Koinberg, I
    Göteborgs universitet, Inst vårdvetenskap och hälsa, Sahlgrenska akademin.
    An integrative review of supportive e-health programs in cancer care2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 4, p. 498-507Article in journal (Refereed)
  • 130.
    Wallin, Viktoria
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Sandman, Per-Olof
    Karolinska institutet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Meanings of eating deficiencies for people admitted to palliative home care2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 05, p. 1231-1239Article in journal (Refereed)
    Abstract [en]

    Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.

    This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.

    The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.

    Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.

  • 131.
    Wallin, Viktoria
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Ersta sjukhus.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Karolinska institutet.
    Sandman, Per-Olof
    Karolinska institutet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Karolinska institutet, Stockholms sjukhem.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Karolinska institutet.
    Maintaining ordinariness around food: partners' experienceies of everyday life with a dying person.2014In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 19-20, p. 2748-2756Article in journal (Refereed)
    Abstract [en]

    Aims and objectives: To explore partners’ experiences of everyday life in caring for a dying person with eating deficiencies at home.

    Background: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons’ eating deficiencies on their partners, from the perspective of everyday life.

    Design: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.

    Methods: Nine people were purposefully selected and interviewed three–six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.

    Results: The partners described experiences of how eating deficiencies brought about changes in the participants’ everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners’ habits were changed.

    Conclusion:Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.

    Relevance to clinical practice: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.

  • 132.
    Westius, Anders
    et al.
    Örebro universitet.
    Kallenberg, Kjell
    Örebro universitet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Umeå universitet.
    Views of life and sense of identity in people with Alzheimer's disease2010In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 30, no 7, p. 1257-1278Article in journal (Refereed)
    Abstract [en]

    Making it possible for people with Alzheimer's disease to retain a sense of identity during the process of the disease poses a great challenge to care-givers, professionals and family carers. The aim of this study is to elucidate the role of the view of life of people with Alzheimer's in framing their sense of identity. Is their view of life a vital aspect of their sense of identity? ‘View of life’ was interpreted as a vital aspect of sense of identity, understood as the individual's beliefs about their life history and about the attributes that characterised them. Twenty-one people with mild to moderate stages of Alzheimer's disease were interviewed about their life story. The narratives were interpreted using a phenomenological hermeneutic method. By telling their life story, the participants also narrated their view of life, i.e. their conception of reality, their central system of values and their basic emotional attitudes. By their own accounts, the origins of the narrators' central values and basic emotional attitudes were established in early life. They also expressed a sense of meaningfulness and continuity when looking back on their lives. The findings suggest that for a care-giver or confidant, having knowledge of a person with dementia's view of life is valuable when seeking to confirm that person's sense of identity.

  • 133. Wikström, Lotta
    et al.
    Eriksson, Kerstin
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Linnéuniversitetet.
    Fridlund, Bengt
    Broström, Anders
    Healthcare Professionals' Perceptions of the Use of Pain Scales in Postoperative Pain Assessments2014In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 27, no 1, p. 53-58Article in journal (Refereed)
    Abstract [en]

    Aim: To describe how healthcare professionals perceive the use of pain scales in postoperative care.

    Background: Pain scales are important but not an obvious choice to use in postoperative care. No study has explored how healthcare professionals experience the use of pain scales. Methods: An explorative design with a phenomenographic approach was used. The sample consisted of 25 healthcare professionals. Semistructured interviews were performed.

    Results: Four descriptive categories emerged - the use of pain scales facilitated the understanding of postoperative pain, facilitated treatment, demanded a multidimensional approach and was affected by work situations.

    Conclusions: Healthcare professionals described that pain scales contribute to the understanding of patient's postoperative pain. It is important to ensure patient understanding and be aware about variations in pain ratings. Dialogue and observations are necessary to be certain what the ratings mean to the patient. The use of pain scales depends on patient's needs and organization. (C) 2014 Elsevier Inc. All rights reserved.

  • 134.
    Åhlin, Johan
    et al.
    Umeå universitet.
    Ericson-Lidman, Eva
    Umeå universitet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå universitet.
    Strandberg, Gunilla
    Umeå universitet.
    Care providers’ experiences of guidelines in daily work at a municipal residential care facility for older people.2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 2, p. 355-363Article in journal (Refereed)
    Abstract [en]

    Background: Guidelines are used as a way of promoting high-quality health care. Most research concerning guidelines has focused on physician behaviour and to improve one specific aspect of care. Care providers working within municipal residential care of older people have described that working with multiple guidelines sometimes exposed them to contradictory demands and trouble their conscience.

    Aim: To describe care providers' narrated experiences of guidelines in daily work at a municipal residential care facility for older people.

    Design: A qualitative descriptive design was adopted.

    Methods: Interviews with eight care providers were carried out between February and March 2012 and analysed by qualitative content analysis.

    Results: Care providers described experiences that guidelines are coming from above and are controlling and not sufficiently anchored at their workplace. Furthermore, they described guidelines as stealing time from residents, colliding with each other, lacking practical use and complicating care, and challenging care providers' judgment. The overall understanding is that care providers describe experiences of struggling to do their best, prioritising between arcane guidelines while keeping the residents' needs in the foreground.

    Conclusion: In order to prevent fragmented use, guidelines have to be coordinated and adapted to the reality of daily practice before implementation. It seems essential to provide opportunities for discussions between care providers, registered nurses and management about how to make guidelines work within their daily practice. Sufficient support, knowledge and involvement are likely key issues that can help care providers to constructively work according to guidelines and thus, by extension, improve the quality of care.

  • 135.
    Ångström-Brännström, Charlotte
    et al.
    Umeå universitet.
    Dahlqvist, Vera
    Ersta Sköndal University College, Department of Health Care Sciences.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå universitet.
    Victor and the Dragon: A Young Child’s Experiences of Discomfort and Comfort, From Diagnosis Until Death2013In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 15, no 8, p. 464-470Article in journal (Refereed)
    Abstract [en]

    Children with progressive cancer often suffer during treatment and at the end of their life, and they need comfort. This study's aim was to describe a child's experiences of being cared for until death, with a focus on discomfort and comfort. Conversations, field notes, drawings, and interviews with the child and his mother and nurse were content analyzed. The themes enduring unbearable situations, expressing emotional suffering, and finding comfort were constructed. The children's parents and other family members are often a significant source of help for the children to endure discomfort and find comfort. Emotional suffering can be expressed in drawing and crying, but sometimes, a child is inconsolable and must endure discomfort. Comfort for a dying child is enhanced by having the family close, experiencing normal daily activities such as drawing and playing, and feeling at home in life despite approaching death.

  • 136.
    Årestedt, Kristofer
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Factors Associated with Feelings of Reward during Ongoing Palliative Family Caregiving2014In: Palliative Medicine, Sage Publications, 2014, p. 699-699Conference paper (Refereed)
    Abstract [en]

    Objectives: Of the few studies that have paid attention to feelings of reward in palliative family caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward in family palliative caregivers. Methods: The study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire including the Rewards of Caregiving Scale (RCS). The questionnaire also included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards. Results: The results showed that more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship to the patient felt less rewarded by caregiving. Significance of results: It seems reasonable that feeling rewarded can significant to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and co-varying factors such as preparedness, anxiety, hope, and being in a spousal relationship with the patient influence the experience.

  • 137.
    Årestedt, Kristofer
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Strömberg, A
    Jaarsma, T
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksson (Alvariza), Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus.
    Palliative Care Needs in Terms of Signs, Symptoms and Health Related Quality of Life (HRQoL) among Patients with Advanced Chronic Heart Failure2014In: Palliative Medicine, Sage Publications, 2014, p. 697-697Conference paper (Refereed)
    Abstract [en]

    Purpose: Despite that chronic heart failure is associated with a poor prognosis, only few patients receive palliative care. Among patients with advanced stages of heart failure, previous studies have mainly focused on solitary specific signs or symptoms and few have described the patients’ situation from a more comprehensive perspective. The aim was therefore to undertake a comprehensive description of potential palliative care needs in terms of signs, symptoms and health related quality of life (HRQoL) among patients with advanced chronic heart failure. Methods: The study included 72 patients with advanced chronic heart failure (NYHA III and IV), taken from a larger multi-centre study. The study variables included demographic data, medical and nutritional status, sleeping disordered breathing, physical activity, self-perceived symptoms and HRQoL, and cognitive function. Results: A large number of the patients scored appetite levels at increased risk for weight loss (53%), scored mild or worse depressive symptoms (47%), was short of breath in rest (43%), and had moderate or worse pain (82%). Mobility problems were common ( 72%) as well as problems conducting usual activities (33%). Problems with low physical activity according to average number of steps (2691±2022) and METs (1.0±0.2), insomnia (64%), daytime sleepiness (44%) and sleep disordered breathing (AHI ≥ 15, 56%) were common. The mean BMI was high (30.2±5.7) and 18% had albumin levels ≤ 35 (mean 38.8±3.7). Impaired cognitive functioning was also common (MMSE ≤ 27, 54%). HRQoL was in general low, but with a great individual variance (EQ-index 0.65±0.22; EQ-VAS 50.8±17.6). Conclusion: Despite that none of the participants received palliative care, this comprehensive description shows that these patients with heart failure have complex health care needs. Therefore, health professional should focus on palliative care needs earlier in the disease trajectory.

  • 138.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Do inequalities in end of life care matter?2014In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 13, no 2, p. 105-107Article in journal (Refereed)
  • 139.
    Öhlen, Joakim
    et al.
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Ekman, Inger
    Zingmark, Karin
    Bolmsjö, Ingrid
    Benzein, Eva
    Conceptual development of "at-homeness" despite illness and disease: a review.2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, p. 23677-Article in journal (Refereed)
    Abstract [en]

    Only one empirical study, the one by Zingmark, Norberg and Sandman published in 1995, explicitly focuses on at-homeness, the feeling of being metaphorically at-home, as a particular aspect of wellness. However, other studies reveal aspects of at-homeness, but if or how such aspects of at-homeness are related to each other is unclear. For this reason, the aim was to review Scandinavian nursing research related to at-homeness in the context of wellness-illness in severe and long-term conditions in order to take a step towards conceptual clarification of "at-homeness." The review included interpretive studies related to severe and long-term illness conducted in Sweden: 10 original articles and 5 doctoral theses. "At-homeness" was found to be a contextually related meaning of wellness despite illness and disease embedded in the continuum of being metaphorically at-home and metaphorically homeless. This was characterized by three interrelated aspects and four processes: being safe through expanding-limiting experiences of illness and time, being connected through reunifying-detaching ways of relating, and being centred through recognition-non-recognition of oneself in the experience and others giving-withdrawing a place for oneself. This conceptualization is to be regarded as a step in conceptual clarification. Further empirical investigation and theoretical development of "at-homeness" are needed. The conceptualization will be a step of plausible significance for the evaluation of interventions aimed at enhancing wellness for people with severe long-term illness, such as the frail elderly, and people with chronic illness or palliative care needs.

  • 140.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Forskning inom palliativ vård i Sverige de senaste fem åren2014Conference paper (Refereed)
  • 141.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Lindrat lidande1998In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 15, no 4, p. 52-7Article, review/survey (Other academic)
  • 142.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Mixed Method Design: Principles and Procedures2011In: Forum qualitative Sozialforschung, E-ISSN 1438-5627, Vol. 12, no 1Article, book review (Other academic)
  • 143.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Nationella riktlinjer för palliativ vård är på väg2012In: Ä, Vol. 2, no 1, p. 7-10Article in journal (Other (popular science, discussion, etc.))
  • 144.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Perspektiv på lidande2013In: Palliativ vård: begrepp & perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkanson, Lund: Studentlitteratur AB, 2013, 1, p. 137-150Chapter in book (Other academic)
  • 145.
    Öhlén, Joakim
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Palliativt forskningscentrum vid Ersta Sköndal högskola och Ersta sjukhus i Stockholm2013In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 90, no 1, p. 92-96Article in journal (Other academic)
    Abstract [sv]

    I denna artikel presenteras ett nystartat Palliativt forskningscentrum i Stockholm. Först ger vi en bakgrund till den forskning som bedrivits vid den tidigare enhet som möjliggjort det nya centrumet. Detta följs av några exempel på överväganden vi gjort vid utvecklingen av forskningsprogrammet. Slutligen presenterar vi några utmärkande drag för den planerade fortsatta forskningen. Vi avser även fortsättningsvis beforska frågor om döende och sorg ur patienters och familjers perspektiv och bidra till kunskapsutvecklingen om erfarenhetsmässiga och existentiella aspekter på palliativ vård. Detta kommer att kompletteras med palliativa teams perspektiv på vård och på genomförande av palliativ vård och implementering av ny kunskap samt organisation och policy för palliativ vård utifrån samhällets och befolkningens perspektiv

  • 146.
    Öhlén, Joakim
    et al.
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Göteborgs universitet.
    Wallengren Gustafsson, C
    Göteborgs universitet, Inst vårdvetenskap och hälsa, Sahlgrenska akademin .
    Friberg, Febe
    University of Stavanger.
    Making sense of receiving palliative treatment: Its significance to palliative cancer care communication and information provision2013In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 36, no 4, p. 265-73Article in journal (Refereed)
  • 147.
    Öresland, Stina
    et al.
    Umeå universitet.
    Määttä, Sylvia
    Göteborgs universitet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Umeå universitet.
    Lützén, Kim
    Karolinska institutet.
    Home-based nursing: an endless journey.2011In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 18, no 3, p. 408-417Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore metaphors for discovering values and norms held by nurses in home-based nursing care. Ten interviews were analysed and interpreted in accordance with a metaphor analytical method. In the analysis, metaphoric linguistic expressions and two entailments emerged, grounded in the conceptual metaphor 'home-based nursing care is an endless journey', which were created in a cross-domain mapping between the two conceptual domains of home-based nursing care and travel. The metaphor exposed home-based nursing care as being in constant motion, thereby requiring nurses to adjust to circumstances that demand ethical maturity. The study focuses on the importance of developing further theories supporting nurses' expressions of their experiences of everyday ethical issues.

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