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Andersson, S., Granat, L., Baxter, R., Reimertz, H., Modeus, C., Pusa, S. & Sandgren, A. (2024). Translation, Adaptation, and Validation of the Swedish Serious Illness Conversation Guide. Journal of Palliative Care, 39(1), 21-28
Open this publication in new window or tab >>Translation, Adaptation, and Validation of the Swedish Serious Illness Conversation Guide
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2024 (English)In: Journal of Palliative Care, ISSN 0825-8597, Vol. 39, no 1, p. 21-28Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Sage Publications, 2024
Keywords
health communication, palliative care, patients, serious illness conversation, translation, validation
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-125617 (URN)10.1177/08258597231210136 (DOI)001088228000001 ()37886797 (PubMedID)2-s2.0-85175310374 (Scopus ID)
Available from: 2023-11-15 Created: 2023-11-15 Last updated: 2024-02-06Bibliographically approved
Baxter, R., Pusa, S., Andersson, S., Fromme, E. K., Paladino, J. & Sandgren, A. (2023). Core elements of serious illness conversations: an integrative systematic review. BMJ Supportive & Palliative Care
Open this publication in new window or tab >>Core elements of serious illness conversations: an integrative systematic review
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2023 (English)In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368Article in journal (Refereed) Epub ahead of print
Abstract [en]

BackgroundAriadne 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. AimThis integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG. DesignLiterature 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. ResultsA 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. ConclusionsCore 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.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2023
Keywords
Communication, End of life care, Hospital care, Quality of life, Psychological care, Supportive care
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-123575 (URN)10.1136/spcare-2023-004163 (DOI)001023721700001 ()37369576 (PubMedID)2-s2.0-85164331520 (Scopus ID)
Available from: 2023-08-10 Created: 2023-08-10 Last updated: 2023-11-07
Persson, H. A., Ahlstrom, G., Årestedt, K., Behm, L., Drevenhorn, E. & Sandgren, A. (2023). Palliative care delivery at nursing homes before and after an educational intervention from professionals' perspective: A pre-post design. Scandinavian Journal of Caring Sciences, 37(1), 229-242
Open this publication in new window or tab >>Palliative care delivery at nursing homes before and after an educational intervention from professionals' perspective: A pre-post design
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2023 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 37, no 1, p. 229-242Article in journal (Refereed) Published
Abstract [en]

Background The principles of palliative care were developed in hospices and specialised palliative care units and have not been sufficiently adapted to and evaluated in nursing homes. Therefore, an educational intervention from an interprofessional education perspective was performed within the project Implementation of Knowledge-Based Palliative Care in Nursing Homes. The aim of this study was to evaluate professionals' experience of palliative care delivery before and after the educational intervention. Methods The educational intervention for nursing home professionals consisted of five 2-h seminars over 6 months at 20 nursing homes. The intervention and control groups consisted of 129 and 160 professionals from 30 nursing homes respectively. The questionnaire 'Your experience of palliative care' was completed 1 month before (baseline) and after (follow-up) the intervention. Descriptive and inferential statistics were calculated. Results The positive effects at follow-up concerned the use of a valid scale for grading symptoms, attendance to the needs of next of kin (including bereavement support), documentation of older persons' wishes regarding place to die and conversations about their transition to palliative care and about how they were treated. Conclusions This study demonstrates a promising interprofessional educational model. However, the paucity of improvements brought to light at follow-up indicates a need for research directed towards a revision of this model. Supervision of professionals during palliative care delivery is one suggestion for change.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
Keywords
evaluation study, interprofessional education, nursing home, palliative care, pre-post design, professional perspective, residential care
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-112978 (URN)10.1111/scs.13084 (DOI)000791615200001 ()35524431 (PubMedID)2-s2.0-85129963368 (Scopus ID)
Available from: 2022-05-23 Created: 2022-05-23 Last updated: 2023-04-17Bibliographically approved
Reigada, C., Sandgren, A., Rivas, S., Carvajal, A., Hermida-Romero, S., Benitez, E., . . . Gomez, B. (2023). Palliative care stay room - designing, testing and evaluating a gamified social intervention to enhance palliative care awareness. BMC Palliative Care, 22(1), Article ID 46.
Open this publication in new window or tab >>Palliative care stay room - designing, testing and evaluating a gamified social intervention to enhance palliative care awareness
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2023 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 22, no 1, article id 46Article in journal (Refereed) Published
Abstract [en]

IntroductionThe message of palliative care can be promoted using creative thinking and gamification. It can be an innovative strategy to promote changes in behaviour, promote thinking, and work on skills such as empathy.AimDesign, test and evaluate a gamified social intervention to enhance palliative care awareness among young university students from non-health background.MethodsParticipatory action research study with mixed methods, Design Thinking and using the Public Engagement strategy. Forty-three undergraduate students participated in a Palliative Care Stay Room and completed the Test of Cognitive and Affective Empathy (TECA) before and after the game. At the end of the game, a ten-minute debriefing was held with the participants, which was concluded with an open conversation. The content analysis was done independently and the sum of the scores of each dimension was compared before and after the activity.FindingsThe Stay Room improved the participants' knowledge and new perspectives about palliative care. Before the game, their views focused on the end of life and after the game on their values, highlighting the dedication of the healthcare professionals who do not treat death but the life until death. After de game, participants (N = 43: female = 23; male = 20; x 19.6 years old) presented higher values in perspective adoption (intellectual ability to put oneself in the other's place) p = 0.046 and in emotional understanding (ability to recognize emotional states) p = 0.018, and had high scores on empathic joy (p = 0.08).ConclusionGamification can be used in teaching and transmitting positive attitudes. Palliative Care and can help young university students to think positively about care issues.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Palliative care, Stay room, Gamified social intervention, Students, University, Palliative care awareness
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-121049 (URN)10.1186/s12904-023-01166-9 (DOI)000975172500001 ()37081434 (PubMedID)2-s2.0-85153177113 (Scopus ID)
Available from: 2023-05-30 Created: 2023-05-30 Last updated: 2024-01-17Bibliographically approved
Pusa, S., Baxter, R. & Sandgren, A. (2023). Physicians' perceptions of the implementation of the serious illness care program: a qualitative study. BMC Health Services Research, 23(1), Article ID 1401.
Open this publication in new window or tab >>Physicians' perceptions of the implementation of the serious illness care program: a qualitative study
2023 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 23, no 1, article id 1401Article in journal (Refereed) Published
Abstract [en]

BackgroundConversations about goals, values and priorities with patients that are seriously ill are associated with improved palliative healthcare. The Serious Illness Care Program is a multi-component program that can facilitate more, better, and earlier conversations between clinicians and seriously ill patients. For successful and sustainable implementation of the Serious Illness Care Program, it is important to consider how stakeholders perceive it. The aim of our study was to explore physicians' perceptions and experiences of implementing the Serious Illness Care Program.

MethodsData were collected through four focus group discussions with physicians (n = 14) working at a hospital where the Serious Illness Care program was in the process of being implemented. Data were analyzed with inductive thematic analysis.

ResultsPhysicians' perceptions of the implementation encompassed three thematic areas: hovering between preparedness and unpreparedness, being impacted and being impactful, and picking pieces or embracing it at all.

ConclusionsThis study identified key aspects related to the individual physician, the care team, the impact on the patient, and the organizational support that were perceived to influence the implementation and sustainable integration of the Serious Illness Care Program. Describing these aspects provides insight into how the Serious Illness Care Program is implemented in practice and indicates areas for future training and development.

Trial registrationNot applicable.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Advance care planning, Health communication, Implementation science, Palliative care, Physicians, Serious Illness care program, Serious Illness conversations
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-126754 (URN)10.1186/s12913-023-10419-5 (DOI)001125736200007 ()38087357 (PubMedID)2-s2.0-85179644265 (Scopus ID)
Available from: 2024-01-16 Created: 2024-01-16 Last updated: 2024-02-15Bibliographically approved
Blomqvist, M., Ivarsson, A., Carlsson, I.-M., Sandgren, A. & Jormfeldt, H. (2023). Relationship between Physical Activity and Health Outcomes in Persons with Psychotic Disorders after Participation in a 2-Year Individualized Lifestyle Intervention. Issues in Mental Health Nursing, 44(7), 629-638
Open this publication in new window or tab >>Relationship between Physical Activity and Health Outcomes in Persons with Psychotic Disorders after Participation in a 2-Year Individualized Lifestyle Intervention
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2023 (English)In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 44, no 7, p. 629-638Article in journal (Refereed) Published
Abstract [en]

People with psychotic disorders have a significantly increased risk of physical diseases and excessive mortality rates. The aim of the study was to investigate relationships between changes in physical activity, levels of salutogenic health, and glycated hemoglobin among people with psychotic disorders after participation in an individualized lifestyle intervention. The results from analyses showed that self-reported increased physical activity was positively associated with the level of salutogenic health and negatively associated with the level of HbA1c on an individual level. The results indicate that coordinated, individualized, holistic and health-promoting nursing care is crucial to enabling enhanced lifestyle within this vulnerable target group.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2023
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-123532 (URN)10.1080/01612840.2023.2212771 (DOI)001013517400001 ()37364236 (PubMedID)2-s2.0-85163005178 (Scopus ID)
Available from: 2023-08-09 Created: 2023-08-09 Last updated: 2023-09-07Bibliographically approved
Vogel, G., Joelsson-Alm, E., Forinder, U., Svensen, C. & Sandgren, A. (2023). Shifting focus: A grounded theory of how family members to critically ill patients manage their situation. Intensive & Critical Care Nursing, 78, Article ID 103478.
Open this publication in new window or tab >>Shifting focus: A grounded theory of how family members to critically ill patients manage their situation
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2023 (English)In: Intensive & Critical Care Nursing, ISSN 0964-3397, E-ISSN 1532-4036, Vol. 78, article id 103478Article in journal (Refereed) Published
Abstract [en]

Objectives: Critical illness is a life-threatening condition for the patient, which affects their family members as a traumatic experience. Well-known long-term consequences include impact on mental health and health-related quality of life. This study aims to develop a grounded theory to explain pattern of behaviours in family members of critically ill patients cared for in an intensive care unit, addressing the period from when the patient becomes critically ill until recovery at home.Research methodology/design: We used a classic grounded theory to explore the main concern for family members of intensive care patients. Fourteen interviews and seven observations with a total of 21 participants were analysed. Data were collected from February 2019 to June 2021.Setting: Three general intensive care units in Sweden, consisting of a university hospital and two county hospitals.Findings: The theory Shifting focus explains how family members' main concern, living on hold, is managed. This theory involves different strategies: decoding, sheltering and emotional processing. The theory has three different outcomes: adjusting focus, emotional resigning or remaining in focus.Conclusion: Family members could stand in the shadow of the patients' critical illness and needs. This emotional adversity is processed through shifting focus from one's own needs and well-being to the patient's survival, needs and well-being. This theory can raise awareness of how family members of critically ill patients manage the process from critical illness until return to everyday life at home. Future research focusing on family members' need for support and information, to reduce stress in everyday life, is needed.Implications for Clinical Practice: Healthcare professionals should support family members in shifting focus by interaction, clear and honest communication, and through mediating hope.

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
Critical care, Critical care nursing, Families, Grounded theory, Intensive care units, Patient, and family centred care
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-123659 (URN)10.1016/j.iccn.2023.103478 (DOI)001034539500001 ()37384978 (PubMedID)2-s2.0-85163423548 (Scopus ID)
Available from: 2023-08-14 Created: 2023-08-14 Last updated: 2023-09-07Bibliographically approved
Vogel, G., Forinder, U., Sandgren, A., Svensen, C. & Joelsson-Alm, E. (2023). The distorted memories of patients treated in the intensive care unit during the COVID-19 pandemic: A qualitative study. Intensive & Critical Care Nursing, 79, Article ID 103522.
Open this publication in new window or tab >>The distorted memories of patients treated in the intensive care unit during the COVID-19 pandemic: A qualitative study
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2023 (English)In: Intensive & Critical Care Nursing, ISSN 0964-3397, E-ISSN 1532-4036, Vol. 79, article id 103522Article in journal (Refereed) Published
Abstract [en]

Background: During the COVID-19 pandemic, patients cared for in the intensive care unit were exposed to many risk factors for developing delirium and subsequent distorted memories. Further, seeing healthcare professionals who have been dressed in personal protective equipment and face masks could have affected the patients ' memories. Therefore, the aim of this study was to explore memories and how they are experienced and managed by former patients who have been treated for COVID-19 in an intensive care unit. Methods: Sixteen former patients treated for COVID-19 at a large emergency hospital in Sweden were interviewed 3-8 months after discharge from the intensive care unit. The data were interpreted using thematic analysis. The Consolidated Criteria for Reporting Qualitative Research checklist was followed in the reporting of the study. Findings: Participants ' descriptions of their memories of treatment in the intensive care unit for COVID-19 generated three themes: ' Distorted truth ' the content in the memories which implied facing death in an unreal distorted environment. ' Captive,' was the experience and feelings linked to memories with a feeling of being exposed and alone, and ' Coping with memories ' explained how participants managed the implications of the memories using a mixture of strategies. Conclusions: For former patients who were admitted to an intensive care unit after a diagnosis of COVID-19, memories caused considerable distress, which were similar to other intensive care patients ' experiences, before the pandemic. Emotion-focused and problem-focused strategies could be used to cope with these memories. Healthcare professionals wearing protective equipment gave the patient a distant feeling, but more important was to be treated with attention/care and respect. Implications for clinical practice: Awareness of the impact of distorted memories on patients who are severely ill and their needs and strategies to cope with these memories can form the basis for early interventions that promotes well-being during care and recovery. Healthcare professionals have an important task to inform patients and their family members about the existence of distorted memories, and talk about the patients ' experience of them, to facilitate their recovery.

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
COVID-19, Critical care, Critical illness, Delusions, Intensive care units, Psychological adaption, Thematic analysis
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-125196 (URN)10.1016/j.iccn.2023.103522 (DOI)001064588700001 ()37598502 (PubMedID)2-s2.0-85168513276 (Scopus ID)
Available from: 2023-10-20 Created: 2023-10-20 Last updated: 2023-11-07Bibliographically approved
Nielsen, M., Persson, C., Werkander Harstäde, C. & Sandgren, A. (2023). The five aspects mealtime environment observationinstrument for assessing mealtime environments in nursing homes: Development and validation. Scandinavian Journal of Caring Sciences
Open this publication in new window or tab >>The five aspects mealtime environment observationinstrument for assessing mealtime environments in nursing homes: Development and validation
2023 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed) Epub ahead of print
Abstract [en]

Aims and Objectives

To further develop and validate the Mealtime instrument, an observational instrument for assessing mealtime environments in nursing homes originating from the theoretical framework: Five Aspects Meal Model (FAMM).

Methodological Design and Justification

A mealtime experience is significant for a sense of well-being. In nursing homes, residents' personal preferences, combined with their diagnoses and different stages of illness, influence their mealtime experience and provide a complexity that has been found difficult to assess. Using FAMM, a theoretical framework as its base, this study, attempts to look at different parts of the mealtime environment. FAMM structures the mealtime environment in to five aspects: room, meeting, product, management control system and atmosphere.

This study's design includes instrument development and validation.

Ethical Issues and Approval

This study has been approved by the Swedish Ethical Review Authority (dnr 2019–05477).

Design

Methodological study.

Research Method

An existing instrument, the Mealtime instrument with FAMM as a theoretical framework, was used as a foundation for the development of the Five Aspects Mealtime Environment Observation Instrument (FAME-OI). Content validity index (CVI) was used to validate FAME-OI.

Results

FAME-OI's item-CVI, scale-CVI and modified Kappa displayed high validity. Changes were made in its structure and phrasing. These developments resulted in having a distinct structure in FAME-OI, in reference to FAMM.

Conclusion

FAME-OI is applicable for clinical use in nursing homes and in research; however, adjustments may be needed before its use in other health care facilities.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-125768 (URN)10.1111/scs.13226 (DOI)001107711600001 ()2-s2.0-85177441977 (Scopus ID)
Available from: 2023-11-22 Created: 2023-11-22 Last updated: 2023-12-18
Reigada, C., Hermida-Romero, S., Tabera, A., Acilu, A., Sandgren, A., Carvajal, A., . . . Centeno, C. (2022). Combining interdisciplinarity and creative design- A powerful strategy to increase palliative care awareness within a university community. Thinking Skills and Creativity, 46, Article ID 101179.
Open this publication in new window or tab >>Combining interdisciplinarity and creative design- A powerful strategy to increase palliative care awareness within a university community
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2022 (English)In: Thinking Skills and Creativity, ISSN 1871-1871, E-ISSN 1878-0423, Vol. 46, article id 101179Article in journal (Refereed) Published
Abstract [en]

Society's understanding of palliative care has room for improvement. Although the World Health Organisation highlighted palliative care as a human right, many people still lack access to this crucial form of treatment. The paucity of understanding and social discussion surrounding palliative care has, moreover, negatively impacted its development and implementation. This study therefore aims to construct a strategy that will empower a specific community to solve their own palliative care-related misunderstandings. Using Participatory Action Research and Design Thinking methodologies and adopting the strategy of Public Engagement in Responsible Research and Innovation, a design group worked for three months through five virtual focus groups. Moving through the phases of empathizing, defining, ideation, prototyping, and testing, the design group generated 33 ideas to address palliative care-related problems. Ideas related to self -learning, the use of technology, and the exchange of personal experiences are highlighted as innovative ways to promote palliative care. The design group adopted a variety of strategies, used disruptive tools, and created and tested rapid prototypes to discover novel solutions. This method of working, centred on interdisciplinarity and creativity, presents an efficient way to involve the members of a community in solving their own problems.

Place, publisher, year, edition, pages
Elsevier, 2022
Keywords
Palliative care, Creative process, Message, Society, Students, University, Education, Palliative awarness
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-119780 (URN)10.1016/j.tsc.2022.101179 (DOI)000926128400016 ()2-s2.0-85141296920 (Scopus ID)
Available from: 2023-03-16 Created: 2023-03-16 Last updated: 2023-04-27Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-3155-575x

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