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  • 1.
    Beck, Ingela
    et al.
    Lunds universitet; Högskolan Kristianstad.
    Olsson Möller, Ulrika
    Lunds universitet.
    Malmström, Marlene
    Lunds universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    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, ISSN 1472-684X, 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.

  • 2.
    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.))
  • 3.
    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.

  • 4.
    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.

  • 5.
    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 study2018In: Journal of Interprofessional Care, ISSN 1356-1820, E-ISSN 1469-9567Article 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.

  • 6.
    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.

  • 7.
    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.

  • 8.
    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.

  • 9.
    Klarare Ljungberg, 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.

  • 10.
    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.))
  • 11.
    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)
  • 12.
    Omerov, Pernilla
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Craftman, Åsa G
    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 review.2019In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524Article in journal (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.

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