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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.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative vård, Dalen sjukhus, Stockholm..
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    The family talk intervention in palliative care: a study protocol2018In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, no 35Article in journal (Refereed)
    Abstract [en]

    Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.

    Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.

    Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.

  • 3.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Wengström, Yvonne
    Karolinska institutet, Örebro universitet.
    Årestedt, Kristofer
    Linköpings universitet, Linnéuniversitetet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet, Capio Geriatrik, Dalen, Stockholm.
    Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: A qualitative study from the perspectives of health professionals and family caregivers2015In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 14, no 16Article in journal (Refereed)
    Abstract [en]

    Background: Family caregivers in palliative care have a need for knowledge and practical support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in specialized palliative home care.

    Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver’s educational, emotional and practical involvement as knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation to family caregivers by healthcare professionals from an intervention manual based on the theoretical framework. For the qualitative data collection, an interpretive descriptive design was chosen. Data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.

    Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was described as a positive experience. Although the content was not always adjusted to the family caregivers’ individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.

    Conclusions: The theoretical framework of knowing, being and doing used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

  • 4. Karlsson, Magdalena
    et al.
    Friberg, Febe
    University of Stavanger.
    Wallengren, Catarina
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: A life-world phenomenological study2014In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, ISSN 1472-684X, Vol. 13, no 28Article in journal (Refereed)
    Abstract [en]

    Background

    Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.

    Methods

    This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.

    Results

    This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.

    Conclusions

    People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.

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