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  • 1.
    Agius, Josefine
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences.
    Trygg kan ingen vara: Elever som lever med skyddade personuppgifter2022In: Skolhälsan, ISSN 0284-284X, no 4, p. 16-21Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    I Sverige lever över 10 000 barn med skyddade personuppgifter på grund av hot och våld. För barn och ungdomar som tvingas leva gömda kan skolan vara en tillflyktsort i en annars kaotisk värld.

  • 2.
    Agius, Josefine
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences.
    Vamstad, Johan
    Marie Cederschiöld University, Institutionen för civilsamhälle och religion, Centre for Civil Society Research.
    Eriksson Lundström, Jenny
    Uppsala universitet.
    Vahlman, Sanna
    Ersta möjlighet, Stockholm.
    Vilket stöd våldsutsatta får blir ett lotteri: Ge kommuner ett särskilt bostadsförsörjningskrav för våldsutsatta2023In: Dagens Samhälle, article id 2023-06-08Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Inrätta en nationell handlingsplan som säkerställer skydd, stöd och stadigvarande boende för våldsutsatta oavsett kommun, föreslår forskare i ett projekt om kvinnor i hemlöshet.

  • 3.
    Beck, Ingela
    et al.
    Lunds universitet.
    Olsson Möller, Ulrika
    Lunds universitet.
    Malmström, Marlene
    Lunds universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Samuelsson, Henrik
    Palliativ vård och ASIH Ystad .
    Lundh Hagelin, Carina
    Sophiahemmet högskola; Karolinska institutet.
    Rasmussen, Birgit
    Lunds universitet.
    Fürst, Carl Johan
    Lunds universitet.
    Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff2017In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 16, p. 1-10, article id 49Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.

    METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.

    RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.

    CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

  • 4.
    Bockgård, Gustav
    et al.
    Department of Scandinavian Languages, Uppsala University, Uppsala.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    von Essen, Louise
    Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    Collaborative Interpretation of Researcher-Generated Photo-Elicitation Findings: Insights From Women With Lived Experience of Homelessness2024In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557Article in journal (Refereed)
    Abstract [en]

    Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants’ perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women’s willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.

  • 5.
    Cameron, Fiona
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Stockholm.
    Janze, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Stockholm.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Homecoming—Dignity Through Movement at the End of Life: A Qualitative Interview Study With Healthcare Professionals2021In: The American Journal of Hospice and Palliative Medicine, ISSN 1049-9091, The American journal of hospice & palliative care, ISSN 1938-2715, Vol. 39, no 1, p. 39-44Article in journal (Refereed)
    Abstract [en]

    AIM: To describe healthcare professionals' and volunteers' experiences of a pathway for movement on a hospice ward.

    METHOD: This was a qualitative study with an inductive approach. Data were collected in a hospice setting through 4 focus group interviews with healthcare professionals and volunteers (n = 12). The focus group participants varied in age, profession, and length of experience in palliative care. The interviews were audio recorded, transcribed and analyzed with qualitative content analysis.

    RESULTS: Dignity through movement at the end of life was the main theme, complemented by 4 sub-themes. Two descriptive sub-themes: "A practical tool to facilitate physical activity" and "Companionship and goals give meaning to the day," and 2 interpretative sub-themes: "Regaining control and having a choice" and "Feeling normal and alive" based on participants' views of patient experiences.

    SIGNIFICANCE OF RESULTS: Indications are that the pathway for movement addresses a wide range of experiences related to different aspects of being human in a difficult situation. Experiences of movement and physical activity can promote wellbeing, dignity, and a sense of feeling "at home" for patients within hospice care. The pathway for movement is simple to set up, offers access to appropriate physical activity and seems to benefit patients both in the early and later phases of palliative care.

  • 6. Cameron, Fiona
    et al.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Janze, Anna
    Ett värdigt liv i rörelse nära döden: Erfarenheter av en rörelsestig på en palliativ vårdavdelning (nr 9)2022Conference paper (Refereed)
    Abstract [sv]

    Bakgrund: Palliativ vård är baserad på en helhetssyn på människan med fokus på livskvalitet och värdighet. Fysisk aktivitet ger positiva effekter för patienter med avancerad cancer men inom palliativ vård är orken ofta begränsad hos den sjuke. Det saknas forskning angående hur upplevelsen av rörelse kan påverka välbefinnandet och hur personal kan främja fysisk aktivitet på en specialiserad palliativ vårdavdelning.

    Syfte: Att beskriva erfarenheterna av en Rörelsestig på en specialiserad palliativ vårdavdelning.

    Metod: Studien är en kvalitativ studie med induktiv ansats. Initialt skapades en 60 meter lång promenadstig med 4 utspridda övningsstationer på hospiceavdelningen. Data om erfarenheterna av Rörelsestigen samlades in genom fyra fokusgruppintervjuer med 11 vårdpersonal och en volontär. Inspelade samtal transkriberades och data analyserades med kvalitativ innehållsanalys.

    Resultat: Dataanalysen resulterade i fem underteman. De första två; ’Ett inspirerande och utmanande verktyg att främja fysisk aktivitet’ samt ’Rörelsestigen innebär gemenskap’ var beskrivande, baserade på deltagarnas personliga erfarenheter och reflektioner. I de tre andra undertemana, ’Mål ger dagen mening’, ’Återtar kontroll över sig själv’ och ’Jag är kvar i livet!’ uttryckte deltagarna sig om patienters och närståendes upplevelser. Undertemana samlades under huvudtemat ’Ett värdigt liv i rörelse nära döden.’

    Betydelse: Resultaten visar ett brett spann i upplevelser av Rörelsestigen, relaterade till olika aspekter av att vara en människa i en svår situation. Studien antyder att upplevelse av rörelse kan främja välbefinnandet och värdighet för patienter inom inneliggande palliativ vård. Rörelsestigen är enkel att sätta upp och har möjlighet att vara ett användbart verktyg för personal att kunna främja fysisk aktivitet.

  • 7.
    Carlsson, Tommy
    et al.
    Röda Korsets högskola; Uppsala universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey2020In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 76, no 12, p. 3528-3536Article in journal (Refereed)
    Abstract [en]

    AIM: To explore experiences of peer support among parents of children with congenital heart defects.

    DESIGN: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden.

    METHODS: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation.

    RESULTS: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities.

    CONCLUSION: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some.

    IMPACT: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.

  • 8.
    Gaber, Sophie
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Karlsson Rosenblad, Andreas
    Uppsala universitet.
    A comparison of perceptions of caring behaviours among women in homelessness, Registered Nurses and nursing students2023In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 37, no 4, p. 959-969Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The population of women in homelessness in Europe is increasing and women in homelessness experience multiple healthcare needs. However, there is insufficient understanding about how perceptions of caring behaviours compare between women in homelessness as patients and nurses in their clinical practice.

    AIM: This study aimed to investigate perceptions of caring behaviours among women in homelessness, Registered Nurses and nursing students.

    METHODS: A cross-sectional design was used with convenience sampling to recruit groups of women in homelessness (n = 37), Registered Nurses (n = 92) and nursing students (n = 142) in Stockholm, Sweden. Between August 2019 and December 2020, data were collected through face-to-face interviews or online, using the Caring Behaviours Inventory-24 instrument. Data were analysed using descriptive statistics and group-comparing hypothesis tests.

    RESULTS: Overall, women in homelessness' perceptions of caring behaviours were significantly lower than nursing students (p < 0.001), who in turn scored significantly lower than Registered Nurses (p < 0.001). The Knowledge and Skill domain had the highest score, and the Connectedness domain had the lowest score in all three groups. The ranking of the individual items according to score varied between the groups. However, all three groups had the highest score for the Knowing how to give shots, IVs, etc., item and the lowest score for the Helping the patient to grow item.

    CONCLUSION: Healthcare providers and nurse educators should consider incongruences and congruences in caring behaviours to better prepare Registered Nurses and nursing students to contribute to increased health equity, and more targeted clinical practice for women in homelessness.

  • 9.
    Gaber, Sophie
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Rosenblad, Andreas Karlsson
    Uppsala universitet; Karolinska institutet.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    The relationship between attitudes to homelessness and perceptions of caring behaviours: A cross-sectional study among women experiencing homelessness, nurses and nursing students2022In: BMC Women's Health, E-ISSN 1472-6874, Vol. 22, no 1, article id 159Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Women experiencing homelessness have complex and multifaceted healthcare needs and yet they are an underserved population across healthcare services. Nurses are trained to perform an integral role in the provision of equitable healthcare and their attitudes towards homelessness may therefore influence the care that women experiencing homelessness receive. This study aimed to examine correlations between attitudes towards homelessness and caring behaviours, and to test if these correlations differed between the groups of women experiencing homelessness, registered nurses, and nursing students.

    METHODS: A cross-sectional design using convenience sampling was used to recruit women experiencing homelessness (n = 37), registered nurses (n = 90), and nursing students (n = 138) in Stockholm, Sweden between August 2019 and December 2020. The participants answered two questionnaires: the Attitudes Toward Homelessness Inventory and the Caring Behaviours Inventory-24. Correlations between ordinal variables were calculated using Spearman's rank correlation ρ. Tests of equality between two independent correlations were performed using a Z-test applied to Fisher's z-transformed correlations. An advisory board of women with lived experience of homelessness supported the interpretation of the results.

    RESULTS: Weak, negative correlations were identified between the Attitudes Toward Homelessness Inventory and Caring Behaviours Inventory-24. The Attitudes Toward Homelessness Inventory mean total scores (SD) were 4.1 (0.6), 4.2 (0.6), 4.1 (0.5) points for the women experiencing homelessness, registered nurse, and nursing student groups, respectively, with the corresponding scores for the Caring Behaviours Inventory-24 being 4.1 (1.1), 5.2 (0.5), 4.8 (0.7) points, respectively.

    CONCLUSIONS: To promote equitable health for women experiencing homelessness, healthcare providers and nurse educators should consider the role of stigmatising attitudes in relation to caring behaviours.

  • 10.
    Karlsson, Elsa
    et al.
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Låt våra hemlösa få bo på de tomma hotellen2021In: Aftonbladet, ISSN 1103-9000, no 2021-03-21Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    DEBATT. Covid-19 pandemin är en kris som påverkar samhällen i hela världen. Det är en utmanande tid för alla, men för socialt utsatta grupper, så som personer i hemlöshet, blir situationen ännu mer ohållbar.

  • 11.
    Karlsson, Hanna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Vamstad, Johan
    Ersta Sköndal Bräcke University College, Centre for Civil Society Research.
    Låt berörda vara del i forskning2021In: Dagens Arena, no 2021-02-28Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    DEBATT: Att forskare och personer som berörs av forskningen arbetar gemensamt kan stärka möjligheten att lösa samhällsproblem och ge bättre kunskap. Det märker vi i vårt arbete med hemlösa kvinnor, skriver forskargruppen Jämlik vård för kvinnor i hemlöshet.

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  • 12.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kommunikation i palliativ vård2019In: Kommunikation: Samtal och bemötande i vården / [ed] Bjöörn Fossum, Lund: Studentlitteratur AB, 2019, 3, p. 343-362Chapter in book (Other (popular science, discussion, etc.))
  • 13.
    Klarare, Anna
    Karolinska institutet; Sophiahemmet Högskola.
    Specialized palliative home care teams: Complementary perspectives of team functions and influences on patients and families2016Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Persons with life-threatening illness are increasingly being cared for and dying at home. Palliative care strives to cater to multiple dimensions such as physical, psychosocial and spiritual or existential, and meeting these needs in patients and families requires multiple competencies. Palliative care organizations propose organization and delivery of care in teamwork models; however, teamwork is complex and can be approached from various perspectives. Previous research has identified gaps in palliative care regarding which components of teamwork are most effective. The overall aim of this thesis was to explore perspectives of team function in specialized palliative care teams, among health care professionals, families and patients. Study I entailed translation and cultural adaptation of a research questionnaire. Study II entailed qualitative interviews with health care professionals (n=15) working in specialized palliative home care and Study III interviews with patients (n=6) and family members (n=7). In Study IV, an exploratory design was used. Initially team leaders (n=77) in palliative care reported team function. Next, health care professionals (n=61) reported team development in the group development questionnaire, patients (n=43) reported symptoms in the Edmonton Symptom Assessment System and family members (n=45) reported satisfaction with care in the translated and culturally adapted FAMCARE-2 questionnaire. Results of the studies are: (I) a translated culturally adapted and initially tested Swedish language version of the FAMCARE-2 scale, (II) health care professionals report that competence, communication and organization are crucial components of teamwork in specialized palliative homecare, (III) patients and families report that they experience security and continuity of care due to 24/7 care, sensitivity to changing needs and demonstrating caring, and (IV) specialized palliative home care teams have a core of registered nurses, physicians and social workers. Positive associations were found between team maturity and team effectiveness.

  • 14.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Teamarbete i palliativ vård2018In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 1, p. 15-19Article in journal (Other (popular science, discussion, etc.))
    Abstract [en]

    Teamwork is regarded a given for organizing and delivering palliative care. Developmental  psychology and team types may facilitate understanding of work group dynamics. Teams are  built on individuals who bring their competencies to the team. If said competence is missing,  teamwork is affected. Teamwork may constitute joint learning. Developing interpersonal and  communication skills as well as practicing self-awareness and undergoing continuing profes- sional development are crucial to teamwork.

  • 15.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Carlsson, Tommy
    Uppsala universitet; Röda Korsets högskola.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Belonging to a community of care: Mothers' experiences of online peer support groups for parents having lost a child with congenital heart defects2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1741-1749Article in journal (Refereed)
    Abstract [en]

    The aim was to study mothers' experiences of online peer support groups after the death of a child. Participants (N = 8) were recruited through a newsletter for the Swedish association for families/children with heart defects, and two closed support groups on Facebook (900 and 100 members) and interviewed by telephone. Transcripts were analyzed with qualitative content analysis. The groups were available around the clock, regardless of support need, and mothers joined both to receive and provide support. Participation in online peer support groups may provide a sense of belonging to a caring community and serve as a valuable complement to healthcare.

  • 16.
    Klarare, Anna
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala, Sweden.
    Ekström, Veronica
    Marie Cederschiöld University, Department of Social Sciences.
    Godskesen, Tove
    Marie Cederschiöld University, Department of Health Care Sciences. Faculty of Nursing and Health Sciences, Nord University, Bodø, Norway.
    Westman, Jeanette
    Marie Cederschiöld University, Department of Health Care Sciences.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala, Sweden.
    Kneck, Åsa
    Marie Cederschiöld University, Department of Health Care Sciences.
    Treatment of trauma-related conditions for people in homelessness: A scoping review2024In: Journal of social distress and the homeless, ISSN 1053-0789, E-ISSN 1573-658XArticle, review/survey (Refereed)
    Abstract [en]

    People in homelessness face significant health inequities, with tri-morbidity, exposure to violence, substance use- and post-traumatic stress disorder. The aim of this scoping review was to describe treatments for trauma-related conditions for persons in homelessness. Systematic searches were performed in three databases: PubMed, PsycInfo and Scopus, guided by the PRISMA checklist. Nine studies fulfilled the criteria and were included in the review. Results show no randomized studies specifically focusing on treatment of trauma-related conditions for people in homelessness. Studies described interventions or programs that focused on consolidating and developing participants’ own strengths and skills to better navigate life with the challenges of homelessness, trauma, and PTSD. Treatment of trauma-related conditions may have positive effects for people in homelessness, as for others. Multimodal treatments, developing personal strengths and skills for people in homelessness, show potential to decrease trauma symptoms, however, more robust studies are needed for inferences and recommendations. 

  • 17.
    Klarare, Anna
    et al.
    Karolinska institutet; Sophiahemmet Högskola.
    Fossum, Bjöörn
    Sophiahemmet Högskola; Karolinska institutet.
    Fürst, Carl Johan
    Karolinska institutet; Lunds universitet.
    Lundh Hagelin, Carina
    Karolinska institutet; Sophiahemmet Högskola.
    Translation and cultural adaptation of research instruments - guidelines and challenges: An example in FAMCARE-2 for use in Sweden2015In: Informatics for Health and Social Care, ISSN 1753-8157, E-ISSN 1753-8165, Vol. 40, no 1, p. 67-78Article in journal (Refereed)
    Abstract [en]

    Background: Assessing and evaluating health care is important, and an abundance of instruments are developed in different languages. Translating existing, validated instruments is demanding and calls for adherence to protocol.

    Purpose: The purpose of this study was to translate and culturally adapt the FAMCARE-2 scale for use in Sweden.

    Methods: Traditional back-translation and the decentering stance were utilized and assessed. Experts in palliative care clinic and research were involved; the FAMCARE-2 instrument was discussed with family caregivers and content validity was assessed by experienced health professionals.

    Results: Significant discrepancies were not revealed by back-translation. Using the decentering stance gave reliable structure and opportunities for reflection throughout the translation process.

    Discussion: Translating an existing instrument into a second language requires interpretation and adaptation more than a naive translation. The back-translation process may be enhanced if the decentering stance is adopted.

  • 18.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fossum, Bjöörn
    Sophiahemmet Högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Team type, team maturity and team effectiveness in specialized palliative home care: an exploratory questionnaire study2019In: Journal of Interprofessional Care, ISSN 1356-1820, E-ISSN 1469-9567, Vol. 33, no 5, p. 504-511Article in journal (Refereed)
    Abstract [en]

    To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.

  • 19.
    Klarare, Anna
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kneck, Åsa
    Marie Cederschiöld University, Department of Health Care Sciences.
    How the selection of research methods can give women in homelessness a voice and a choice: An attempt to promote an inclusive society with gender equality, health and well-being for all2022Conference paper (Other academic)
  • 20.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fossum, Bjöörn
    Sophiahemmet högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Leadership in specialist palliative home care teams: A qualitative study2020In: Journal of Nursing Management, ISSN 0966-0429, E-ISSN 1365-2834, Vol. 28, no 1, p. 102-111Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.

    BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.

    METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.

    RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.

    CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.

    IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

  • 21.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Lindblad, Marléne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Covid-19-pandemins inverkan på samhällsstruktur: nationell gemensam digital utbildning för en vård och omsorg i kris2021In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, no 1, p. 11-15Article in journal (Other academic)
    Abstract [sv]

    I och med covid-19-pandemin förutspåddes ett snabbt ökat behov av personal i vård och omsorg. Ersta Sköndal Bräcke högskola och Socialstyrelsen startade ett samarbete för att skapa en digital avgiftsfri utbildning. Syftet var att ge personer utan vårderfarenhet en introduktion till vård- och omsorgsarbete och att vara ett stöd för vårdgivare vid introduktion av ny personal. Utbildningen utformades i två delar varav Socialstyrelsen ansvarade för den ena och Ersta Sköndal Bräcke högskola för den andra. Högskolan utbildningsdel motsvarar tre dagars utbildning med olika läraktiviteter och kunskapstester. En viktig del i utbildningen är att bidra med kunskap om palliativ vård och döende. Dessa ämnen kan på grund av okunskap omgärdas av rädsla och missförstånd. Efter godkänd genomgången kurs får deltagaren ett kursintyg. I januari 2021 hade 2 172 intyg utfärdats.

  • 22.
    Klarare, Anna
    et al.
    Karolinska institutet & Sophiahemmet Högskola.
    Lundh Hagelin, Carina
    Karolinska institutet & Sophiahemmet Högskola.
    Fürst, Carl Johan
    Karolinska institutet & Lunds universitet.
    Fossum, Bjöörn
    Karolinska institutet & Sophiahemmet Högskola.
    Team interactions in specialized palliative care teams: a qualitative study2013In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 16, no 9, p. 1062-1069Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned.

    AIM: The aim was to explore team interaction among team members in specialized palliative care teams.

    DESIGN: Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. Setting/participants: Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included.

    RESULTS: Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care.

    CONCLUSION: Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers.

  • 23.
    Klarare, Anna
    et al.
    Karolinska institutet; Sophiahemmet Högskola.
    Rasmussen, Birgit, H.
    Lunds universitet.
    Fossum, Bjöörn
    Sophiahemmet Högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet; Karolinska institutet.
    Hansson, Johan
    Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet Högskola; Stiftelsen Stockholms sjukhem; Karolinska institutet.
    Experiences of security and continuity of care: patients' and families' narratives about the work of specialized palliative home care teams2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 2, p. 181-189Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Those who are seriously ill and facing death are often li ing with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.

    OBJECTIVE: Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).

    METHOD: A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.

    RESULTS: Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.

    SIGNIFICANCE OF RESULTS: Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

  • 24.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Rasmussen, Birgit H.
    Lunds universitet.
    Fossum, Bjöörn
    Sophiahemmet högskola; Karolinska institutet; Södersjukhuset.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, p. 1-9, article id e12948Article in journal (Refereed)
    Abstract [en]

    Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

  • 25.
    Klarare, Anna
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Rydeman, Ing-Britt
    Marie Cederschiöld University, Department of Health Care Sciences.
    Kneck, Åsa
    Marie Cederschiöld University, Department of Health Care Sciences.
    Bos Sparén, Elisabeth
    Marie Cederschiöld University, Department of Health Care Sciences.
    Winnberg, Elisabeth
    Marie Cederschiöld University, Department of Health Care Sciences.
    Bisholt, Birgitta
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Röda Korsets Högskola.
    Methods and strategies to promote academic literacies in health professions: A scoping review2022In: BMC Medical Education, E-ISSN 1472-6920, Vol. 22, no 1, article id 418Article, review/survey (Refereed)
    Abstract [en]

    Background: Universities enroll students from diverse backgrounds every year, with 300 million students expected in higher education by 2025. However, with widening participation, increasing numbers of students enrolling in higher health education and future health professions will be underprepared to meet demands of academic literacies, i.e. ability to read, interpret and critically evaluate academic texts and communicating the understanding verbally or in writing. The aim of this scoping review was to describe and explore methods and strategies to promote development of academic literacies.

    Results: Thirty-one relevant studies were included and analyzed according to scoping review guidelines. The results showed four strategies: (1) integrating learning activities to develop academic literacies in the regular curriculum, (2) changing the course design with new methods for teaching and learning, (3) establish collaborations amongst academics and librarian faculty, and (4) adding courses or foundation year focusing on development of academic literacies. The results are discussed in light of the United Nations Agenda 2030 Sustainable Development, Goal 4, Quality Education, and widening participation.

    Conclusions: Aspects of widening participation and inclusion in higher education have been debated, and increasing numbers of students from diverse backgrounds are expected to enter health studies in higher education. We encourage integration of teaching and learning activities targeting parallel learning of course materials and development of academic literacies, beyond study skills. Embracing epistemic complexity and diversity as well as choosing strategic work with academic literacies may provide a starting point toward realizing sustainable development goals and widening participation.

  • 26.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Söderlund, Mona
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Wikman, Anna
    Uppsala universitet.
    McGreevy, Jenny
    Region Sörmland; Centre for Clinical Research Sörmland.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Caring Behaviors Inventory-24: Translation, cross-cultural adaptation and psychometric testing for use in a Swedish context2021In: Human Resources for Health, E-ISSN 1478-4491, Vol. 19, no 1, article id 11Article in journal (Refereed)
    Abstract [en]

    Background: Patients’ health and wellbeing are promoted when nurses successfully conceptualize caring in clinical practice. Measuring caring behaviors can advance knowledge about caring and has potential to improve caring practices and the outcomes of care. The Caring Behaviors Inventory-24 (CBI-24) is an empirical instrument for measuring caring, developed to determine perceptions of caring among patients and nurses. Since the instrument was not available in Swedish, the aim of this study was therefore to translate into Swedish and cross-culturally adapt CBI-24 for a Swedish healthcare context, and to psychometrically analyze the Swedish version of CBI-24.

    Methods: The study used a traditional forward and back translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews, and (6) psychometric evaluations. 

    Results: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential and conceptual equivalence. The cognitive interviews generated thoughts and reflections, which resulted in adjusting three items of the CBI-24 SWE. For psychometric analyses, 234 persons answered the questionnaire. Results indicated acceptable overall model fit in the χ2-value for the confirmatory factor analysis, while for the heuristic goodness-of-fit indices, the comparative fit index (CFI) and the standardized mean square residual (SMSR) indicated good model fits, and the root mean square error approximation (RMSEA) indicated an acceptable fit. 

    Conclusions: CBI-24 SWE has been shown to be a psychometrically acceptable instrument for use in Swedish research contexts. Further studies regarding the clinical usefulness of the instrument may be in order. In particular, CBI-24 SWE should be evaluated among nurses in rural areas.

  • 27.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Wikman, Anna
    Uppsala universitet.
    Söderlund, Mona
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    McGreevy, Jenny
    Region Sörmland.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Translation, Cross-Cultural Adaptation, and Psychometric Analysis of the Attitudes Towards Homelessness Inventory for Use in Sweden2021In: Worldviews on Evidence-Based Nursing, ISSN 1545-102X, E-ISSN 1741-6787, Vol. 18, no 1, p. 42-49Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Homelessness is an increasing problem worldwide, and the origins of homelessness in high-income countries are multifaceted. Due to stigma and discrimination, persons in homelessness delay seeking health care, resulting in avoidable illness and death. The Attitudes Towards Homelessness Inventory (ATHI) was developed to cover multiple dimensions of attitudes toward persons in homelessness and to detect changes in multiple segments of populations. It has, however, not previously been translated to Swedish.

    AIMS: The aim of the present study was to translate, cross-culturally adapt, and psychometrically test the ATHI for use in a Swedish healthcare context.

    METHODS: The project used a traditional forward- and back-translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back-translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews including registered nurses (n = 5), nursing students (n = 5), and women in homelessness (n = 5); and (6) psychometric evaluations. The final ATHI questionnaire was answered by 228 registered nurses and nursing students in the year 2019.

    RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential, and conceptual equivalence. Confirmatory factor analysis was used to examine if the collected data fitted the hypothesized four-factor structure of the ATHI. Overall, it was found that the model had an acceptable fit and that the Swedish version of ATHI may be used in a Swedish healthcare context.

    LINKING EVIDENCE TO ACTION: The ATHI has been shown to be a psychometrically acceptable research instrument for use in a Swedish healthcare context. The systematic and rigorous process applied in this study, including experts with diverse competencies in translation proceedings and testing, improved the reliability and validity of the final Swedish version of the ATHI. The instrument may be used to investigate attitudes toward women in homelessness among nursing students and RNs in Sweden.

  • 28.
    Klarare Ljungberg, Anna
    et al.
    Sophiahemmet Högskola, Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet Högskola, Karolinska institutet.
    Möjligheter & utmaningar för teamarbete i palliativ vård2013In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 30, no 2, p. 47-50Article in journal (Other (popular science, discussion, etc.))
  • 29.
    Kneck, Åsa
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Salzmann‐Erikson, Martin
    Högskolan i Gävle.
    Reflections on health among women in homelessness: A qualitative study2022In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 29, no 5, p. 709-720Article in journal (Refereed)
    Abstract [en]

    Introduction: Mental health issues are common among women in homelessness, alongside undertreated chronic physical conditions leading to serious and unnecessary complications. Even though homelessness and risks of impaired health have been researched, broader perspectives of health are absent.

    Aim: To describe reflections on health among women with experiences of homelessness.

    Method: We conducted thirteen interviews with women in homelessness using researcher-driven photo elicitation. Together with an advisory board of women with lived experience of homelessness, researchers were guided by the DEPICT model for collaborative data analysis and performed a thematic analysis.

    Findings: Women with experiences of homelessness emphasized three main resources for achieving health and well-being: feelings of having a home, being involved in authentic relationships and experiences of preserved dignity.

    Implication for practice: Healthcare needs to integrate the perceived resources for health and well-being when caring for women in homelessness. It is imperative since women will return to the healthcare setting only if they feel safe and secure, and only if dignity is preserved or restored. The results promote utilization of an integrative nursing approach; understanding that the health of women in homelessness is inseparable from their environment and social determinants for health, such as housing and social integration.

  • 30.
    Kneck, Åsa
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Salzmann-Erikson, Martin
    Högskolan i Gävle.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    “Stripped of dignity” - Women in homelessness and their perspectives of healthcare services: A qualitative study2021In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 120, article id 103974Article in journal (Refereed)
    Abstract [en]

    Background: A much more substantial European evidence base on the accessibility of healthcare services among women experiencing homelessness across healthcare systems in Europe is warranted.

    Objective: To give voice to women with experiences of homelessness, and to explore their perspectives of healthcare services in an EU country with universal healthcare.

    Design: The study is part of a research program striving to promote equal healthcare through co-production with women in homelessness. An advisory board of women with lived experience of homelessness was established and a qualitative, interpretive and exploratory design was employed.

    Participants: 26 women with experience of homelessness were interviewed. Their median age was 46 years (range 42) and 70% were roofless/houseless.

    Methods: Data were analyzed with content analysis. Co-production and joint analyses were conducted by researchers and three women with experience of homelessness, using the DEPICT model for collaborative analysis.

    Results: The analysis resulted in one overall theme: Visiting healthcare from the outskirts of society, comprising three sub-themes: Demand for a life in order - Exclusion in action; Unwell, unsafe and a woman - Multifaceted needs challenge healthcare; and Abuse versus humanity – power of healthcare encounters to raise or reduce. Women's experiences of care encounters were disparate, with prevalent control, mistrust and stigma, yet healthcare professionals that demonstrated respect for the woman's human dignity was described both as life-altering and lifesaving.

    Conclusions: Women in homelessness live on the outskirts of society and have multiple experiences of exclusion and loss of dignity within healthcare services. The multifaceted care needs challenge healthcare, leading to women feeling alienated, invisible, disconnected and worthless. We urge registered nurses to take actions for inclusion health, i.e. focusing health efforts of people experiencing extreme health inequities. We can lead the way by speaking up and confronting discriminating behaviors, protecting and restoring human dignity in caring relationships, and framing healthcare services for all citizens.

  • 31.
    Lind, Susanne
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Bengtsson, Astrid
    Capio Vårdcentral, Stockholm.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Registered nurses’ experiences of caring for patients in hospitals transitioning from curative to palliative care: A qualitative study2022In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 24, no 4, p. 820-827Article in journal (Refereed)
    Abstract [en]

    Aim and objectives The aim of this study was two-fold: to illuminate registered nurses’ experiences of palliative care and of caring for patients transitioning from curative to palliative care in hospitals.

    Design A qualitative descriptive design was used.

    Methods Group interviews were conducted with eleven registered nurses in three different hospital settings. Content analysis was performed.

    Results The results are presented in four themes: Understanding palliativecare in a hospital setting; Involving, supporting and caring for patients and families; Striving for consensus and common goals of care; and Struggling with the hospital environment.The registered nurses described struggling with the interpretation of palliative care and with how to transfer it into clinical practice in their specific care settings. Teamwork and collaboration was challenging, and goals of care incongruent within the team.

    Conclusions Further implementation of a palliative care approach, with core components symptom relief, teamwork, communication and relationship, and family support, is crucial to improve both patient care and the conditions enabling registered nurses to provide good care for the patients and their families in hospital settings.

  • 32.
    Lundh Hagelin, Carina
    et al.
    Sophiahemmet högskola; Karolinska institutet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Fürst, Carl Johan
    Lunds universitet.
    The applicability of the translated Edmonton Symptom Assessment System: Revised [ESAS-r] in Swedish palliative care2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 4, p. 560-562Article in journal (Refereed)
    Abstract [en]

    The relief of symptoms, whether they are physical, psychological, social or existential, or whether the symptom relief promotes well-being, is very important in the care of people who are severely ill or at the end of life. The development of patient-reported outcome measures (PROM) in palliative care is particularly challenging, as patients often suffer from multiple symptoms and are easily fatigued. Great effort is made to develop short and effective measures to meet this challenge. The Edmonton Symptom Assessment System (ESAS) includes numeric rating scales, ranging from 0 to 10, for the assessment of nine symptoms common in patients affected by an advanced cancer, and with the option of adding a possible tenth patient-specific symptom [1]. The instrument is also widely used as a PROM among patients affected by non-malignant diseases in palliative care, and is used in both scientific studies and in clinical practice [2]. ESAS was first translated into Swedish in 1997/1998 (personal communication Prof. Strang, 2015) and has been used in research [3] and in clinical practice. However, there is no official Swedish translation of ESAS available on the developer’s website (http://www.palliative.org/), and several different versions exist in the country, nonetheless, its use is recommended by Swedish national regulatory documents [4,5] and in both local and national guidelines for palliative care. ESAS was revised to the ESAS-r scale in 2011 [6], due to identified concerns about potentially confusing items, and the possibility of unintentionally reversing the scores of some items. Therefore, we decided to translate, culturally adapt and evaluate ESAS-r for use among patients and health care professionals in Sweden.

  • 33.
    Mattsson, Elisabet
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kvinnor far illa inom ramen för samhällets institutioner2023In: Dagens arena, no 2023-04-14, p. 1Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Vårdprogram, journalsystem och arbetsrutiner bör ändras för att öka säkerheten för kvinnor med skyddade personuppgifter. 

  • 34.
    Mattsson, Elisabet
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Lindblad, Marléne
    Röda Korsets Högskola.
    Kneck, Åsa
    Marie Cederschiöld University, Department of Health Care Sciences.
    Salzmann-Eriksson, Martin
    Högskolan i Gävle.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Voices of women in homelessness during the outbreak of the COVID-19 pandemic: A co-created qualitative study2023In: BMC Women's Health, E-ISSN 1472-6874, Vol. 23, no 11Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Women in homelessness face extreme health- and social inequities. It could be postulated that during societal crises, they become even more vulnerable. Thus, the aim was to explore experiences related to the COVID-19 pandemic among women in homelessness.

    METHODS: Ten interviews were conducted with women in homelessness, in Stockholm, Sweden, using researcher-driven photo elicitation. The data analysis was guided by the DEPICT model for collaborative data analysis and a qualitative content analysis was performed. A collaborative reference group of women with lived experience of homelessness contributed to the research process through designing the data collection, performing the data analysis, and providing feedback during report writing.

    RESULTS: For women in homelessness, the COVID-19 pandemic was adding insult to injury, as it significantly affected everyday life and permeated most aspects of existence, leading to diminished interactions with others and reduced societal support. Thus, in an already dire situation, the virus amplified health- and social issues to another level. The women strived to find their balance on the shifting sands of guidelines and restrictions due to the pandemic. Adhering to the new social distancing rules and guidelines in line with the rest of society, was simply impossible when experiencing homelessness. However, for some women the pandemic was nothing but a storm in a teacup. The harsh reality continued irrespectively, living one day at a time and prioritizing provision for basic human needs.

    CONCLUSIONS: The COVID-19 pandemic and homelessness can be viewed as two intersecting crises. However, the women's aggregated experiences were greater than the sum of experiencing homelessness and meeting the threat of the virus. Gender, exposure to violence, poverty, social isolation, and substance use were additional factors that further marginalized the women during the pandemic. To rebuild a better and more sustainable post-pandemic future for all, global commitment to ending homelessness is crucial. In addition, addressing social determinants of health must be the number one health intervention.

  • 35.
    Omerov, Pernilla
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Gransjön Craftman, Åsa
    Sophiahemmet högskola.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Homeless persons' experiences of health- and social care: A systematic integrative review2019In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 28, no 1, p. 1-11Article, review/survey (Refereed)
    Abstract [en]

    Homelessness is associated with high risks of morbidity and premature death. Many interventions aimed to improve physical and mental health exist, but do not reach the population of persons experiencing homelessness. Despite the widely reported unmet healthcare needs, more information about the barriers and facilitators that affect access to care for persons experiencing homelessness is needed. A systematic integrative review was performed to explore experiences and needs of health- and social care for persons experiencing homelessness. The following databases were searched: AMED, ASSIA, Academic Search Complete, CINAHL, Cochrane library, Nursing and Allied Database, PsycInfo, PubMed, Scopus and Web of Science Core Collection. Twenty-two studies met the inclusion criteria of empirical studies with adult persons experiencing homelessness, English language, and published 2008-2018. Fifty percent of the studies were of qualitative and quantitative design, respectively. Most studies (73%) were conducted in the United States (n=11) and Canada (n=5). The analysis resulted in three themes Unmet basic human needs, Interpersonal dimensions of access to care, and Structural and organizational aspects to meet needs. The findings highlight that persons in homelessness often must prioritize provision for basic human needs, such as finding shelter and food, over getting health- and social care. Bureaucracy and rigid opening hours, as well as discrimination and stigma, hinder these persons' access to health- and social care.

  • 36.
    Steindal, Simen A
    et al.
    Lovisenberg Diaconal University College, Oslo, Norway.
    Nes, Andréa Aparecida Goncalves
    Lovisenberg Diaconal University College, Oslo, Norway.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Dihle, Alfhild
    Oslo Metropolitan University, Oslo, Norway.
    Winger, Anette
    Oslo Metropolitan University, Oslo, Norway.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Pettersen, Fredrik Solvang
    Lovisenberg Diaconal University College, Oslo, Norway.
    Holmen, Heidi
    Oslo Metropolitan University, Oslo, Norway.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Advantages and Challenges in Using Telehealth for Home-Based Palliative Care: Protocol for a Systematic Mixed Studies Review2021In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 10, no 5, article id e22626Article, review/survey (Refereed)
    Abstract [en]

    BACKGROUND: Given the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth for home-based palliative care.

    OBJECTIVE: The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients' use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients.

    METHODS: This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data, and assess methodological quality. The data will then be analyzed using thematic synthesis.

    RESULTS: We describe the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021.

    CONCLUSIONS: Following the ethos of patient-centered palliative care, this systematic mixed studies review could lead to recommendations for practice and policy, enabling the development and implementation of telehealth applications and services that align with patients' preferences and needs at home.

    INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/22626.

  • 37.
    Steindal, Simen A.
    et al.
    Lovisenberg diakonale høgskole, Norway.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg diakonale høgskole, Norway.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Dihle, Alfhild
    Oslo Metropolitan University, Norway.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Winger, Anette
    Oslo Metropolitan University, Norway.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Patients’ Experiences of Telehealth in Palliative Home Care: Scoping Review2020In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, no 5, p. 1-11, article id e16218Article, review/survey (Refereed)
    Abstract [en]

    Background: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.

    Objective: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.

    Methods: A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.

    Results: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.

    Conclusions: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

  • 38.
    Steindal, Simen A
    et al.
    Lovisenberg Diaconal University College, Norway; VID Specialized University, Norway.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Norway.
    Godskesen, Tove
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Holmen, Heidi
    Oslo Metropolitan University, Norway; Oslo University Hospital, Norway.
    Winger, Anette
    Oslo Metropolitan University, Norway.
    Österlind, Jane
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Dihle, Alfhild
    Oslo Metropolitan University, Norway.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: A Systematic Mixed Studies Review2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25Article, review/survey (Refereed)
    Abstract [en]

    Background: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth in home-based palliative care.

    Objective: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients’ use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients.

    Methods: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis.

    Results: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth.

    Conclusions: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.

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  • 39.
    Vamstad, Johan
    et al.
    Marie Cederschiöld University, Institutionen för civilsamhälle och religion, Centre for Civil Society Research.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Social rights and street-level services for women in homelessness: A qualitative study2022In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588Article in journal (Refereed)
    Abstract [en]

    Women in homelessness are among the most marginalized citizens in the modern welfare state and they are thus living indicators of the reach of social rights to basic welfare. In this article, qualitative interviews with women in homelessness in Sweden are used to illustrate the ways in which women in this group are denied their social rights and why. A theoretical understanding based is that social rights are essential for the realization of civil and political rights, but also that they are a first stepping-stone on a path to a more ordered and dignified life for these women. The analysis highlights several ways in which rights are unrealized, including both individual and institutional factors. We conclude that outreach activities and specialized health care services are two important tools for ensuring basic social rights that a fuller citizenship can be built on.

  • 40.
    Wallin, Viktoria
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Omerov, Pernilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Caring for patients with eating deficiencies in palliative care—Registered nurses' experiences: A qualitative study2022In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 31, no 21-22, p. 3165-3177Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: The aim was to explore RNs' experiences of caring for patients with eating deficiencies in palliative care.

    BACKGROUND: Food and mealtimes are fundamental aspects for wellbeing and social interactions. The worldwide trajectory of ageing populations may result in increased need for palliative care. Everyday life with chronic life limiting illness and eating deficiencies is challenging for patients and families. RNs are key care providers at end-of-life.

    DESIGN: A qualitative study with an inductive approach was used.

    METHODS: Nineteen experienced RNs in palliative care were interviewed through telephone; interviews were audio recorded and transcribed verbatim. Inductive qualitative content analysis was performed, and the COREQ checklist was used to guide proceedings.

    RESULTS: The overarching theme, Supporting persons with eating deficiencies in-between palliative care and end-of-life care, is represented by three sub-themes: Easy to stick with doing, Just being, without doing, is hard and Letting go. Near end-of-life, eating symbolized social belonging and quality of life for RNs, whereas for patients and families, eating symbolized life. RNs tried practical solutions, however, not always according to patients' and families' preferences.

    CONCLUSIONS: RNs were well prepared to tackle physical inconveniences and provide support, however, less prepared to encounter existential, psychological and social issues in relation to eating deficiencies. Although RNs stated that human beings stop eating when they are about to die, letting nature run its' course and facilitating patients' transition to end-of-life care was challenging.

    RELEVANCE TO CLINICAL PRACTICE: Food and mealtimes represent fundamental aspects of human life and denote central parts in RNs clinical practice in palliative care. The findings can inspire development of a comprehensive palliative care approach to support patients and families. Structured reflection in relation to clinical practice may support and encourage RNs, caring for patients with eating deficiencies, in mastering both doing and being.

  • 41.
    Wallin, Viktoria
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Omerov, Pernilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Experiences of food and mealtime from the perspective of patients with chronic life-limiting disease: a mixed-method systematic review2021In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 77, no 11, p. 4400-4413Article, review/survey (Refereed)
    Abstract [en]

    Aim: To describe and synthesise experiences of food and mealtimes from the perspective of patients with chronic life-limiting disease.

    Design: A mixed-method systematic review.

    Data sources: The databases Academic Search Complete, CINAHL, Nursing and Allied Health Database, PsycINFO, PubMed, Soc Index and Web of Science Core Collection were searched (January 2000 to March 2019).

    Review methods: Out of 3151 identified articles, 24 were included for appraisal and synthesis, using a data based convergent design.

    Results: Four themes were derived: 'understanding hampered eating-perhaps it is best to let nature run its course'; 'food and meals evoke distress-reducing joy, testing interim ways'; 'struggling with food and meals-eating to please others and to postpone death'; and 'food and meals as caring and love-flanked by social disconnecting'.

    Conclusion: For patients with chronic life-limiting disease, food entailed potential to remain healthy, improve well-being and prolong life. Meanwhile, eating difficulties were experienced as fundamentally affecting social life and interactions; consequently, joy around food and meals was lost.

  • 42.
    Wallin, Viktoria
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Omerov, Pernilla
    Marie Cederschiöld University, Department of Health Care Sciences.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Patienters erfarenheter av mat och måltider vid kronisk livsbegränsande sjukdom: En litteraturöversikt med mixade metoder2022Conference paper (Refereed)
    Abstract [sv]

    Bakgrund: Mat är ett måste för överlevad, men mat har även viktig roll för att vi ska må bra och känna delaktighet i vardagen. Med allt längre livslängd, lever allt fler människor med kronisk livs begränsandesjukdom, vilket innebär att ökade behov av vård och stöd relaterat till mat och måltider. Att leva med kronisk livsbegränsande sjukdom, innebär att någon gång under sjukdomsförloppet förändras matvanor jämfört med hur det var innan sjukdomen. Oavsett diagnos upplever många ätsvårigheter då aptit förändras och matintag blir mindre. Eftersom mat och måltider har en central roll i vardagen, medför ätsvårigheter oro för patienter och närstående.

    Syfte: Att beskriva och syntetisera patienters erfarenheter av mat och måltider vid kronisk livsbegränsande sjukdom.

    Metod: En systematisk mixed-method review genomfördes, med sökningar i Academic Search Complete, CINAHL, Nursing and Allied Health Database, PsycINFO, PubMed, Soc Index och Web of Science Core Collection, från januari 2000 - mars 2019. Av 3151 identifierade artiklar inkluderades 24 för syntetisering med en data baserad convergent design. Vid innehållsanalys kodades text som svarade mot syftet med beskrivande ord, t ex, fysiska hinder, oro, existentiellt. Två forskare arbetade parallellt och blindat vid inklusion, kvalitetsbedömning av artiklar (CASP, 2021) och innehållsanalys. Data jämfördes och tematiserades utifrån likheter och mönster (Sandelowski & Leeman, 2012). Alla steg och beslut diskuterades i forskargruppen för konsensus.

    Resultat: Patienters erfarenheter av mat och måltider vid vid kronisk livsbegränsande sjukdom innebar fysiska, psykologiska, sociala och existentiella aspekter av lidande, hälsa och välbefinnande. Fyra teman identifierades: • Förståelse för hämmad aptit – det kanske är bäst att låta naturen ha sin gång. • Mat och måltider framkallar obehag – minskad glädje, nya strategier. • Kamp med mat och måltider – äta för att behaga samt skjuta upp döden. • Mat och måltider som omsorg och kärlek – flankerat av social frånkoppling.

    Betydelse: Översikten kan bidra till ökad förståelse för patienternas situation och behov av stöd. Dess fokus kan utgöra grund för interventionsstudier avseende existentiell oro kring mat och måltider, samt en start för utveckling av kliniska riktlinjer för vård vid kronisk livsbegränsande sjukdom.

  • 43.
    Wallin, Viktoria
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Rosenblad, Andreas
    Uppsala universitet, Karolinska institutet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Registered nurses’ perceptions of food and mealtimes in palliative care: a cross-sectional studyIn: Article in journal (Refereed)
  • 44.
    Wergeland, Daniel
    et al.
    Lovisenberg Diakonale Høgskole, Norway; Oslo universitetssykehus, Norway.
    Harsten, Kristine
    Lovisenberg Diakonale Høgskole, Norway; Oslo universitetssykehus, Norway.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Steindal, Simen A.
    Lovisenberg Diakonale Høgskole, Norway; VID vitenskapelige høgskole, Norway.
    Hospital nurses' experiences of assessing health status changes in stem-cell transplanted patients in home care: A qualitative study2022In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 31, no 21-22, p. 3190-3199Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To explore hospital nurses' experience assessing changes in the health status of stem-cell transplanted patients in home care (HC).

    BACKGROUND: Stem-cell transplanted patients in HC are treated at home instead of in hospital wards. Hospital nurses visit patients daily and play a key role in assessing the patients' health status. Previous studies on HC for stem-cell transplanted patients focus mainly on safety in HC versus hospital care. No studies regarding nurses' experience assessing patients' health status at home when patients undergo stem-cell transplantation were found.

    DESIGN: Qualitative study with an explorative design.

    METHODS: Data were collected via 14 individual semi-structured interviews with hospital nurses working with stem-cell transplanted patients in HC. Data were analysed using systematic text condensation. The reporting of the study was guided by the COREQ checklist.

    RESULTS: Three categories emerged from the data analysis: 1) Effective communication and clinical intuition enhances the assessment of patients' general health condition; 2) It is challenging to rely on one's own judgment in remote assessment; and 3) There are key facilitators in performing remote clinical assessments.

    CONCLUSIONS: Effective communication and clinical intuition enhanced the assessment of patients' general health conditions. The lack of physical presence during remote assessments made using clinical intuition in the assessment process difficult. Experience with hematopoietic stem-cell transplantation was seen as important to facilitate accurate remote clinical assessments.

    RELEVANCE TO CLINICAL PRACTICE: Nurses with responsibility for hospital at-home telephone care should receive training in remote communication and should shadow hospital at-home nurses during in home visits to gain experience assessing patients' health status. Telehealth aspects such as videoconferencing and remote patient monitoring should be considered for more accurate remote assessment. This could potentially result in more effective assessments and reduced readmissions and could promote nurses' confidence in their assessments.

  • 45.
    Wergeland, Daniel
    et al.
    Oslo University Hospital, Norway.
    Harsten, Kristine
    Oslo University Hospital, Norway.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Steindal, Simen A
    Lovisenberg Diaconal University College, Norway; VID Specialized University, Norway.
    Title authors reply to letter to Editor 'Follow-up care after stem-cell transplant'2023In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, no 13-14, p. 4195-4196Article in journal (Other academic)
  • 46.
    Widberg, Cecilia
    et al.
    Stiftelsen Stockholms Sjukhem.
    Wiklund, Birgitta
    Stiftelsen Stockholms Sjukhem.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Patients’ experiences of eHealth in palliative care: an integrative review2020In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 19, no 1, p. 1-14, article id 158Article, review/survey (Refereed)
    Abstract [en]

    Background: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care.

    Methods: The aim of this study was to describe patients’ experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014–2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies.

    Results: The findings are synthesized in the main theme: E-health applications – promoting communication on patients’ and families’ terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients’ experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology.

    Conclusions: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources.

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