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  • 1.
    Andersson, Sofia
    Umeå University, Faculty of Medicine, Department of Nursing.
    Vård i livets slutskede på särskilt boende för äldre personer: närstående och vårdpersonals skattade och berättade erfarenheter2017Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Background Hospital care for older people in Europe is being replaced by other care facilities such as residential care homes (RCHs). RCHs are therefore playing an increasing and important role in end-of-life (EOL) care. The goal of palliative care is to improve quality of life both for persons with life-threating diseases and for their family members. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve the quality of EOL care. There is a lack of research focusing on family members’ and care professionals’ perspectives on the use of pathways in EOL care in RCHs. This thesis is part of a larger research project on the implementation of the LCP in RCHs.

    Aim The overall aim of this thesis was to describe family members’ and care professionals’ perspectives on end-of-life care in residential care homes for older people.

    Methods This thesis consists of four studies, two quantitative and two qualitative. The data in Study I were based on the questionnaire, “Views of Informal Carers – Evaluation of Services” (VOICES), filled in by family members (n=189) of older persons who had died in RCHs. Descriptive statistics were used to analyse the data. Study II was based on registered expected deaths in RCHs (n=22 855) reported to the Swedish Register of Palliative Care (SRPC) by care professionals. The data were explored with univariate and multivariate logistic regression analysis. In Study III and IV, a descriptive qualitative design was used. Data in study III were collected through focus groups and individual interviews with care professionals (n=24). The data in Study IV were collected through individual interviews with family members of residents who had died in RCHs (n=15). The data in Studies III and IV were analysed with qualitative content analysis.

    Results The family members in Study I reported that they had been given enough help with nursing such as getting dressings change and with medication, and personal care such as bathing, dressing, help with eating and going to the bathroom, in the last three days of life. They also reported that they were told (86.2%) that the resident was likely to die shortly, and most of them (94.1%) reported that they felt that the resident had died in their preferred place. Just under half of the residents (46.5%) had experienced pain, with the majority (86.4%) receiving treatment for this symptom, and slightly more than half (55.9%) had experienced shortness of breath, with around a third of them (39.7%) receiving treatment for this. Shortness of breath was significantly more common in the younger age group (<85 years; p=0.01) and they were significantly more likely to have received treatment (p=0.006).

    In Study II, the SRPC data revealed high prevalence of pain (68.8%) and anxiety (44.0%). Shortness of breath (14.1%) and nausea (10.2%) were less common. In the multivariate regression analyses, two explanatory factors were significantly associated with symptom relief, of pain, nausea, anxiety and shortness of breath: use of validated pain assessment scales, and assessment of oral health. In both the univariate and multivariate logistic regression analysis, individual presciptions of injections to be administered when required (PRN, pro re nata) for pain, nausea, and anxiety were significantly associated with relief of symptom.

    The care professionals in Study III described several aspects of their experiences of EOL care after implementation of the LCP: they became more confident through a shared approach, they were supported in tailoring the care to the residents’ individual needs, they were supported in involving the family members in decision-making and care, and they had become more aware of the care environment.

    The family members in Study IV also described several aspects of their experiences of care of the dying in RCHs where an EOL care pathway was used: they felt confident in a familiar and warm atmosphere, they were involved or not in the EOL care, and they were consoled by witnessing the care professionals’ endeavours to relieve suffering.

    Conclusion The results described in this thesis indicate a high quality of nursing care and personal care, but also inadequate management of symptom relief in the last days of life for residents in RCHs. Still, despite a high prevalence of symptoms such as pain, shortness of breath, and anxiety, RCHs were described as a natural and appropriate place of death. The results confirm that use of a validated pain assessment scale and medication PRN prescribed could be a way to increase the quality of EOL care. The results also indicate that a standardized care pathway can offer one way to improve the quality of care. The care professionals felt supported in involving the family members in care and decision making, and both family members and care professionals felt supported in the care by the use of the LCP. 

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  • 2.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden; Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Granat, Lisa
    Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden; Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Baxter, Rebecca
    Umeå University, Faculty of Medicine, Department of Nursing. Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden; Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Reimertz, Helene
    Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden; Unit of Palliative Care, Region Kronoberg, Växjö, Sweden.
    Modéus, Carina
    Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden; Unit of Palliative Care, Region Kronoberg, Växjö, Sweden.
    Pusa, Susanna
    Umeå University, Faculty of Medicine, Department of Nursing. Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden; Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sandgren, Anna
    Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden; Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Translation, adaptation, and validation of the swedish serious illness conversation guide2024In: Journal of Palliative Care, ISSN 0825-8597, Vol. 39, no 1, p. 21-28Article in journal (Refereed)
    Abstract [en]

    Objective: To translate and adapt the Serious Illness Conversation Guide for use within the Swedish healthcare setting and examine the validity and acceptability of the Swedish Serious Illness Conversation Guide.

    Methods: Three rounds of cognitive interviews were conducted (T1-3); patients (T1 n = 11; T2 n = 10; T3 n = 8), family members (T1 n = 5; T2 n = 2; T3 n = 2), and healthcare professionals (T1 n = 6; T2 n = 6; T3 n = 5). The guide was iteratively adapted based on interview feedback, clinical experience, and the literature. The guide was tested on training days with physicians and nurses.

    Results: The Swedish Serious Illness Conversation Guide was found to be useful in supporting serious illness conversations. Clinicians reported that some questions were emotionally challenging. Explicit questions about prognosis and timing were excluded. Instead, the dual approach of “hoping for the best and preparing for the worst” was used to explore patients’ thoughts about the future.

    Conclusions: Patients, family members, and healthcare professionals found the Swedish Serious Illness Conversation Guide to be appropriate, sensitive, and responsive to their needs. The Swedish Serious Illness Conversation Guide may facilitate a more health-promoting approach to serious illness conversations. Further research is needed to understand the impact of these conversations on person-centered and goal-concordant care.

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  • 3.
    Andersson, Sofia
    et al.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Växjö, Sweden.
    Granat, Lisa
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University.
    Sandgren, Anna
    Translation, Cultural Adaptation, and Content Validation of the Palliative Care Self-Efficacy Scale for Use in the Swedish Context2022In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 3, article id 1143Article in journal (Refereed)
    Abstract [en]

    The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and contentvalidation process of the PCSE scale. In this study, forward and backward translations, pre-testingincluding an expert panel (n = 7), and cognitive interviewing with possible healthcare professionals (physicians, nurses, and assistant nurses) (n = 10) were performed. Experts in palliative care rateditems on a Likert scale based on their understandability, clarity, sensitivity, and relevance. The item-level content validity index (I-CVI) and modified kappa statistics were calculated. Healthcareprofessionals were interviewed using the think-aloud method. The translation and validation process resulted in the final version of the PCSE scale. The average I-CVI for sensitivity was evaluated andapproved. Most of the items were approved for clarity, some items lacked understandability, but a majority of the items were considered relevant. The healthcare professionals agreed that the items in the questionnaire evoked emotions, but were relevant for healthcare professionals. Thus, the Palliative Care Self-Efficacy scale is relevant for assessing healthcare professionals’ self-efficacy inpalliative care in a Swedish care context. Further research using psychometric tests is required.

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  • 4.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University.
    Care professional's experiences about using Liverpool Care Pathway in end-of-life care in residential care homes2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 299-308Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Residential care homes (RCHs) play an important role in end-of-life care, being the most common place of death for elderly people in several European countries. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve and ensure quality care at the end of life. There is a lack of scientific evidence supporting the use of care pathways.

    DESIGN: A descriptive qualitative study.

    OBJECTIVE: The aim was to describe care professionals' experiences of using the Liverpool Care Pathway for the Dying Patient in the care of dying residents in residential care homes.

    METHODS: Five focus group interviews and two individual interviews with enrolled nurses (n = 10), Registered Nurses (n = 9) and general practitioners (n = 5) were carried out and analysed using qualitative content analysis.

    RESULTS: Care professionals expressed that they became confident through a shared approach to care, were supported to tailor the care according to the residents' individual needs, were supported to involve family members in decision-making and care and became more aware of the care environment.

    CONCLUSION: The results of this study indicate that the LCP might be a useful tool for care professionals in improving end-of-life care in RCHs through increased attention to the goals of care, the individual needs of residents and family involvement.

  • 5.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    End-of-life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 1, p. 72-84Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care.

    OBJECTIVE: The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members.

    DESIGN: A retrospective survey design.

    METHODS: Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used.

    RESULTS: In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old.

    CONCLUSION: This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.

  • 6.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    The Institute for Palliative Care, Faculty of Medicine, Department of Clinical Science, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Family members' experiences of care of the dying in residential care homes where the Liverpool Care Pathway was used2018In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 24, no 4, p. 194-202Article in journal (Refereed)
    Abstract [en]

    Background: Residential care homes (RCHs) are increasingly becoming a common place of death for older people.

    Aim: The aim of this study was to describe family members' experiences of care of the dying in RCHs where the Liverpool care pathway for the dying patient was used.

    Methods: This study had a descriptive qualitative study design. Fifteen (n=15) individual interviews were analysed using qualitative content analysis.

    Results: The analysis resulted in three themes: being confident in a familiar and warm atmosphere, being involved vs not being involved in end-of-life (EoL) care, and being consoled by witnessing the health professional's endeavour to relieve suffering.

    Significance of results: The results indicated that taking part in a care plan seems to increase family members' feelings of involvement in EoL care. This study also highlights the family members' needs for increased possibilities for EoL discussions with the GP.

  • 7.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Martinsson, Lisa
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Fürst, Carl Johan
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    End-of-life discussions in residential care homes improves symptom control: a national register study2021In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.

    OBJECTIVE: The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.

    METHODS: All expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.

    RESULTS: The EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.

    CONCLUSION: The results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.

  • 8.
    Andersson, Sofia
    et al.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sandgren, Anna
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Organizational readiness to implement the serious illness care program in hospital settings in Sweden2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 539Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Serious Illness Care Program (SICP) is a model developed for structured communication, identifying patients, and training physicians to use a structured guide for conversations with patients and family members. However, there is a lack of knowledge regarding the sustainable implementation of this conversation model. Therefore, the aim of this study was to identify barriers and enablers during the implementation of the SICP in hospital settings.

    METHODS: The SICP was implemented at 20 units in two hospitals in Sweden. During the implementation process, seven individual interviews and two group interviews were conducted with seven facilitators (five physicians, one behavioral therapist, and one administrator). Data were analyzed using qualitative content analysis, first inductively, and then deductively using the organizational readiness for change as a theoretical framework.

    RESULT: The analysis resulted in three factors acting as enablers and eight factors acting as enablers and/or barriers during the implementation of the SICP. The three factors considered as enablers were preliminaries, identifying patients, and facilitator's role. The eight factors considered as enablers and/or barriers were broad implementation, leadership, time, confidence, building foundation, motivation to work change, motivation for training in serious illness conversations, and attitudes.

    CONCLUSION: This study indicates limited readiness to implement the SICP in hospital settings due to considerable variation in organizational contextual factors, change efficacy, and change commitment. The identified enablers and barriers for implementation of the SICP could guide and support future implementations to be sustainable over time.

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  • 9.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm.
    Fürst, Carl Johan
    The Institute for Palliative Care, Faculty of Medicine, Department of Clinical Science, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg.
    Factors associated with symptom relief in end-of-life care in residential care homes: a national register-based study2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 5, p. 1304-1312Article in journal (Refereed)
    Abstract [en]

    Context: Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life.

    Objectives: The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care.

    Methods: The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N = 22,855). Univariate and multiple logistic regression analyses were conducted.

    Results: Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety.

    Conclusion: Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect.

  • 10.
    Baxter, Rebecca
    et al.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjo, Sweden.
    Pusa, Susanna
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjo, Sweden.
    Andersson, Sofia
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjo, Sweden.
    Fromme, Erik K.
    Ariadne Labs, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA.
    Paladino, Joanna
    Ariadne Labs, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA; Massachusetts General Hospital, Boston, Massachusetts, USA.
    Sandgren, Anna
    Linnéuniversitetet, Institutionen för hälso- och vårdvetenskap (HV).
    Core elements of serious illness conversations: an integrative systematic review2023In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368Article in journal (Refereed)
    Abstract [en]

    Background: Ariadne Labs' Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups. Explicating the core elements of serious illness conversations could support the inclusion or exclusion of certain components in future iterations of the programme and the guide.

    Aim: This integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG.

    Design: Literature published between 1 January 2014 and 20 March 2023 was searched in MEDLINE, PsycINFO, CINAHL and PubMed. All articles were evaluated using the Joanna Briggs Institute Critical Appraisal Guidelines. Data were analysed with thematic synthesis.

    Results: A total of 64 articles met the inclusion criteria. Three themes were revealed: (1) serious illness conversations serve different functions that are reflected in how they are conveyed; (2) serious illness conversations endeavour to discover what matters to patients and (3) serious illness conversations seek to align what patients want in their life and care.

    Conclusions: Core elements of serious illness conversations included explicating the intention, framing, expectations and directions for the conversation. This encompassed discussing current and possible trajectories with a view towards uncovering matters of importance to the patient as a person. Preferences and priorities could be used to inform future preparation and recommendations. Serious illness conversation elements could be adapted and altered depending on the intended purpose of the conversation.

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  • 11.
    Baxter, Rebecca
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Health and Caring Sciences, Linneaus University, Växjö, Sweden.
    Pusa, Susanna
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Health and Caring Sciences, Linneaus University, Växjö, Sweden.
    Andersson, Sofia
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Health and Caring Sciences, Linneaus University, Växjö, Sweden.
    Sandgren, Anna
    Department of Health and Caring Sciences, Linneaus University, Växjö, Sweden.
    Perils and payoffs for patients in serious illness conversations as described by physicians: a qualitative study2024In: BMJ Open Quality, E-ISSN 2399-6641, Vol. 13, no 2, article id e002734Article in journal (Refereed)
    Abstract [en]

    Background: The Serious Illness Care Programme was developed to promote more, better and earlier serious illness conversations. Conversations about goals and values are associated with improved experiences and outcomes for seriously ill patients. Clinicians’ attitudes and beliefs are thought to influence the uptake and performance of serious illness conversations, yet little is known about how clinicians perceive the impact of these conversations on patients. This study aimed to explore physicians’ perceptions regarding the impact of serious illness conversations for patients.

    Methods: The Serious Illness Care Programme was implemented as a quality improvement project in two hospitals in Southern Sweden. Focus group evaluation discussions were conducted with 14 physicians and inductive thematic analysis was undertaken.

    Results: The results revealed that physicians considered potential perils and optimised potential payoffs for patients when engaging in serious illness conversations. Potential perils encompassed inappropriate timing, damaging emotions and shattering hopes. Potential payoffs included reflection time, secure space, and united understandings.

    Conclusions: Physicians depicted a balance in evaluating the perils and payoffs of serious illness conversations for patients and recognised the interrelation of these possibilities through continual assessment and adjustment.

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  • 12.
    Granat, Lisa
    et al.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Andersson, Sofia
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Hadziabdic, Emina
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sandgren, Anna
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Translation, adaptation, and validation of the Self-efficacy in Palliative Care scale (SEPC) for use in Swedish healthcare settings2022In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 21, no 1, article id 48Article in journal (Refereed)
    Abstract [en]

    Background: One challenge for healthcare professionals when delivering palliative care can be their lack of confidence. The Self-efficacy in Palliative Care Scale (SEPC) is considered a valid and reliable assessment scale to evaluate confidence when delivering palliative care. Currently, there is not a reliable instrument aimed to measure healthcare professionals’ confidence in palliative care in Swedish. Therefore, this study aimed to translate, culturally adapt, and validate the SEPC-scale for use in a Swedish healthcare context.

    Methods: This study applied the World Health Organization’s (WHO) guidelines for translating and adapting instruments, using forward and back-translation, an expert panel, and cognitive interviews. Swedish experts in palliative care (n = 6) assessed the Swedish version of the SEPC-scale based on its relevance, understandability, clarity, and sensitivity on a Likert scale. Methods involved calculation of content validity index (CVI) with modified kappa statistics and cognitive interviewing with healthcare professionals (n = 10) according to the “think-aloud” method.

    Results: Calculation of I-CVI (Item-CVI) showed that the Swedish SEPC-scale was considered relevant but needed some modifications to improve its understandability and clarity. The experts recognized an absence of precision in some items that affected clarity and understanding. Likewise, the healthcare professionals highlighted some challenges with understandability and clarity. They indicated that the scale was relevant, but a few items needed adjustment to fit a broader range of healthcare professionals. Items that referred to death and dying could be sensitive but were considered relevant.

    Conclusions: The SEPC-scale is considered valid for use in Swedish healthcare practice, for a broad range of healthcare professionals, and for diagnoses other than cancer. This study shows that cultural adaptation is necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.

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  • 13.
    Granat, Lisa
    et al.
    Department of Health and Caring Sciences, Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden.
    Andersson, Sofia
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Health and Caring Sciences, Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden.
    Åberg, Daniel
    Region Kronoberg, Växjö, Sweden.
    Hadziabdic, Emina
    Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sandgren, Anna
    Department of Health and Caring Sciences, Center for Collaborative Palliative Care, Linnaeus University, Växjö, Sweden.
    Evaluation of the swedish self‐efficacy in palliative care scale and exploration of nurses' and physicians' self‐efficacy in swedish hospitals: a cross‐sectional study2024In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed)
    Abstract [en]

    Background: Previous research found that healthcare professionals had low preparedness for palliative care. Thus, it is necessary to explore healthcare professionals' self-efficacy. The Swedish Self-Efficacy in Palliative Care Scale (SEPC-SE) evaluates readiness in communication, patient management and multidisciplinary teamwork; however, it should be tested on a larger population. Furthermore, the constructs of the SEPC-SE should be compared to that of the original SEPC.

    Aim: This study aimed to evaluate the consensus between the construct validity and reliability of the SEPC and the translated and adapted SEPC-SE. Furthermore, it aimed to describe and compare the self-efficacy of nurses and physicians in hospitals and explore the associated factors.

    Methods: The nurses (n = 288) and physicians (n = 104) completed the SEPC-SE. Factor analysis with Cronbach's alpha evaluated validity and reliability, and an analysis using the Mann-Whitney U test compared self-efficacy and multiple linear regression-associated factors.

    Results: The SEPC-SE revealed three factors with high reliability. Education or experience in specialised palliative care was minor, especially for nurses. Self-efficacy was highest in patient management (nurses, median [md] = 74.57, physicians md = 81.71, p = 0.010) and communication (nurses md = 69.88, physicians md = 77.00, p = 0.141) and lowest in multidisciplinary teamwork (nurses md = 52.44, physicians md = 62.88, p = 0.001). The strongest associations with self-efficacy were education at work and advanced homecare experiences. In addition, there were significant associations between years in the profession, male sex, physicians and university education.

    Conclusion: The SEPC-SE is valid and reliable for measuring self-efficacy. Nurses had lower self-efficacy than physicians. Physicians were associated with higher self-efficacy and had more education and experience in palliative care settings, which may explain their levels of self-efficacy.

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  • 14.
    Martinsson, Lisa
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Andersson, Sofia
    Umeå University, Faculty of Medicine, Department of Nursing.
    Symptom assessment in the dying: family members versus healthcare professionals2023In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368Article in journal (Refereed)
    Abstract [en]

    Objectives: Symptom management and support of the family members (FMs) are consideredessential aspects of palliative care. During end of life, patients are often not able to self-reportsymptoms. There is little knowledge in the literature of how healthcare professionals(HCPs) assess symptoms compared with FMs.The objective was to compare the assessment ofsymptoms and symptom relief during the final week of life between what was reported by FMsand what was reported by HCPs.

    Methods: Data from the Swedish Register of Palliative Care from 2021 and 2022 were usedto compare congruity of the assessments by the FMs and by HCPs regarding occurrence and reliefof three symptoms (pain, anxiety and confusion), using Cohen’s kappa.

    Results: A total of 1131 patients were included. The agreement between FMs and HCPs was poorfor occurrence of pain and confusion (kappa 0.25 and 0.16), but fair for occurrence of anxiety(kappa 0.30). When agreeing on a symptom being present, agreement on relief of thatsymptom was poor (kappa 0.04 for pain, 0.10 for anxiety and 0.01 for confusion). The trendwas that HCPs more often rated occurrence of pain and anxiety, less often occurrence ofconfusion and more often complete symptom relief compared with the FMs.

    Conclusions: The views of FMs and HCPs of the patients’ symptoms differ in the end-of-life context, but both report important information and their symptom assessments should beconsidered both together and individually. More communication between HCPs and FMs couldprobably bridge some of these differences.

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  • 15.
    Pusa, Susanna
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Baxter, Rebecca
    Umeå University, Faculty of Medicine, Department of Nursing. Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Andersson, Sofia
    Umeå University, Faculty of Medicine, Department of Nursing. Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Fromme, Erik K.
    Ariadne Labs, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA; Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
    Paladino, Joanna
    Ariadne Labs, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA; Massachusetts General Hospital, Boston, Massachusetts, USA.
    Sandgren, Anna
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Core competencies for serious illness conversations: an integrative systematic review2024In: Journal of Palliative Care, ISSN 0825-8597Article in journal (Refereed)
    Abstract [en]

    Objective: The Serious Illness Care Program was developed to support goals and values discussions between seriously ill patients and their clinicians. The core competencies, that is, the essential clinical conversation skills that are described as requisite for effective serious illness conversations (SICs) in practice, have not yet been explicated. This integrative systematic review aimed to identify core competencies for SICs in the context of the Serious Illness Care Program. 

    Methods: Articles published between January 2014 and March 2023 were identified in MEDLINE, PsycINFO, CINAHL, and PubMed databases. In total, 313 records underwent title and abstract screening, and 96 full-text articles were assessed for eligibility. The articles were critically appraised using the Joanna Briggs Institute Critical Appraisal Guidelines, and data were analyzed using thematic synthesis.

    Results: In total, 53 articles were included. Clinicians' core competencies for SICs were described in 3 themes: conversation resources, intrapersonal capabilities, and interpersonal capabilities. Conversation resources included using the conversation guide as a tool, together with applying appropriate communication skills to support better communication. Intrapersonal capabilities included calibrating one's own attitudes and mindset as well as confidence and self-assurance to engage in SICs. Interpersonal capabilities focused on the clinician's ability to interact with patients and family members to foster a mutually trusting relationship, including empathetic communication with attention and adherence to patient and family members views, goals, needs, and preferences.

    Conclusions: Clinicians need to efficiently combine conversation resources with intrapersonal and interpersonal skills to successfully conduct and interact in SICs.

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