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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
    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.

  • 3.
    Klarare, Anna
    et al.
    Sophiahemmet Högskola.
    Hansson, Johan
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    Fürst, Carl Johan
    Lundh Hagelin, Carina
    Sophiahemmet Högskola.
    Team type, team maturity and team effectiveness in specialized palliative home care: An exploratory questionnaire studyManuscript (preprint) (Other academic)
  • 4.
    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.

  • 5.
    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.

  • 6.
    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.

  • 7.
    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.))
  • 8.
    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)
1 - 8 of 8
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