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Lagerin, A., Melin Johansson, C., Holmberg, B., Godskesen, T., Hjorth, E., Junehag, L., . . . Udo, C. (2025). Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study. BMC Palliative Care, 24(1), Article ID 47.
Open this publication in new window or tab >>Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study
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2025 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 24, no 1, article id 47Article in journal (Refereed) Published
Abstract [en]

Background Communication is central to implementing palliative care (PC) and effective interdisciplinary team functioning. Communication about existential issues is often urgent in PC, yet interdisciplinary teams frequently lack the time and education to meet these communication needs. Thus, more knowledge of existential conversations indifferent PC contexts is required.

Aim This study aimed to gain an in-depth understanding of healthcare professionals’ (HCPs) experiences of existential conversations with patients with PC needs and their next-of-kin by generating a theoretical model.

Method Seven focus-group interviews that included 26 HCPs who worked with PC patients in different care settings were carried out in 2020 and 2022. The grounded theory method was used to analyse and compare data from the interview transcripts.

Results The HCPs’ primary concern in daily work was establishing a trusting relationship, a prerequisite for enabling existential conversations with a person with PC needs and/or their next-of-kin. The main concern was characterised by the core category maintaining presence and four categories describing interdisciplinary strategies that the HCPs used to achieve a trusting relationship and enable existential conversations in the late phase of life. Several potential barriers also hindered existential conversations. The theoretical model ‘meaningful existential conversations in PC’ was constructed.

Conclusions The interdisciplinary strategies used to establish existential conversations, the potential barriers to these conversations and the model we present can be used as a basis for reflection in professional collaborative learning in PC, as a tool for teachers in educational PC programmes and as a guide for HCPs in PC.

Keywords
Communication, End-of-life, Existential, Healthcare personnel, Interdisciplinary, Palliative care, Presence, Qualitative methods
National Category
Nursing
Identifiers
urn:nbn:se:du-48337 (URN)39972289 (PubMedID)2-s2.0-85218421814 (Scopus ID)
Available from: 2025-02-05 Created: 2025-02-05 Last updated: 2025-03-10Bibliographically approved
Ayoub, M., Lövgren, M., Kreicbergs, U. & Udo, C. (2025). Voices of Children with Cancer and Their Siblings in the Family Talk Intervention. Children, 12(3), Article ID 266.
Open this publication in new window or tab >>Voices of Children with Cancer and Their Siblings in the Family Talk Intervention
2025 (English)In: Children, E-ISSN 2227-9067, Vol. 12, no 3, article id 266Article in journal (Refereed) Published
Abstract [en]

Background: Children in pediatric oncology report unmet needs related to communication and information about the illness, care involvement, and psychosocial support. Supporting the whole family involves challenges, with a risk that children's voices are not heard above those of the adults. Article 12 of the UNCRC has been a catalyst in supporting children's voices and their right to participate in processes that affect them. The aim of this study was to explore how children with cancer and their siblings experienced participation in a family-centered psychosocial support intervention, the Family Talk Intervention (FTI).

Methods: Interviews were held with 35 children (ill and siblings) from 26 families in pediatric oncology after having completed the FTI. A combined deductive and inductive qualitative content analysis was undertaken, guided by the Lundy model of child participation.

Results: Children's experiences of being able to express their views, being listened to, and being involved during FTI were mainly positive. This was related to their participation in individual meetings where they could raise their concerns and views, undertake small activities while talking, and have their voices and needs mediated to relevant adults, such as parents and professionals.

Conclusions: The findings of this study showed that the FTI for families in pediatric oncology created opportunities to promote child participation. These findings indicate that, by offering children an individual space where they can express themselves freely and supporting them in various ways to do so, the children's voices and involvement are strengthened.

Keywords
Article 12; child participation; family-centered; pediatric oncology; psychosocial support
National Category
Social Work
Identifiers
urn:nbn:se:du-50259 (URN)10.3390/children12030266 (DOI)001451986700001 ()40150549 (PubMedID)
Available from: 2025-02-26 Created: 2025-02-26 Last updated: 2025-04-08Bibliographically approved
Ayoub, M., Lövgren, M., Kreicbergs, U. & Udo, C. (2024). Children with Cancer and Sibling’s Experiences of Participation in the Family Talk Intervention. In: : . Paper presented at 6th Maruzza International Congress on Paediatric Palliative Care, Rome, Italy, 16-18 October 2024.
Open this publication in new window or tab >>Children with Cancer and Sibling’s Experiences of Participation in the Family Talk Intervention
2024 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Social Work
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-49529 (URN)
Conference
6th Maruzza International Congress on Paediatric Palliative Care, Rome, Italy, 16-18 October 2024
Available from: 2024-10-16 Created: 2024-10-16 Last updated: 2024-10-17Bibliographically approved
Udo, C., Lövgren, M., Sejersen, T. & Kreicbergs, U. (2024). Experiences of families of children with spinal muscular atrophy and the healthcare professionals supporting them during the COVID-19 pandemic: a nationwide study. Journal of Pediatric Rehabilitation Medicine, 17(3), 299-306
Open this publication in new window or tab >>Experiences of families of children with spinal muscular atrophy and the healthcare professionals supporting them during the COVID-19 pandemic: a nationwide study
2024 (English)In: Journal of Pediatric Rehabilitation Medicine, ISSN 1874-5393, E-ISSN 1875-8894, Vol. 17, no 3, p. 299-306Article in journal (Refereed) Published
Abstract [en]

Purpose: This study aimed to explore how parents and grandparents of children with spinal muscular atrophy (SMA) perceived how the COVID-19 pandemic affected their access to medication and physiotherapy. Further, healthcare professionals’ experiences of the care of children with SMA during the pandemic were explored.

Methods: Thirty-nine parents and three grandmothers of 28 children with SMA answered a web-based survey at two time-points. Telephone follow-ups were conducted with seven of the parents. Parallel focus group interviews were conducted with three interdisciplinary teams of healthcare professionals.

Results: Results showed that 21 family members, 12 children, and nine parents in the study tested positive for COVID-19 during the pandemic. None of the children became seriously ill. All respondents, however, indicated that the pandemic had a significant impact on their everyday life. It made socializing difficult for the children and reduced their access to physiotherapy, hydrotherapy, and personal care attendants. The pandemic also influenced the location of some nusinersen treatments. The professionals reported that, although much of their work continued as usual, they experienced increased stress from their role in nusinersen assessments.

Conclusion: These results suggest that it may be valuable to find ways for healthcare professionals to support each other and to support their efforts to help severely ill children and their families now that healthcare systems have opened up again.

Keywords
children, COVID-19, families, professionals, spinal muscular atrophy
National Category
Nursing Neurosciences
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-48336 (URN)10.1177/18758894241299923 (DOI)39973581 (PubMedID)
Available from: 2025-01-16 Created: 2025-01-16 Last updated: 2025-02-25Bibliographically approved
Udo, C., Sejersen, T. & Kreicbergs, U. (2024). Experiences of family members of children with spinal muscular atrophy during the Covid-19 pandemic. In: : . Paper presented at The 4th Scientific International Congress on SMA in Ghent 14 – 16 March 2024.
Open this publication in new window or tab >>Experiences of family members of children with spinal muscular atrophy during the Covid-19 pandemic
2024 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Nursing
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-48165 (URN)
Conference
The 4th Scientific International Congress on SMA in Ghent 14 – 16 March 2024
Projects
Familjers och personals erfarenheter, överväganden och ställningstaganden avseende nya medicinska möjligheter för barn med spinal muskelatrofi (SMA)
Available from: 2024-04-07 Created: 2024-04-07 Last updated: 2024-04-08Bibliographically approved
Holm, M., Thermaenius, I., Alvariza, A., Lundberg, T., Udo, C., Årestedt, K. & Lövgren, M. (2024). Implementering av Family Talk Intervention för barnfamiljer med palliativa vårdbehov: hälso- och sjukvårdskuratorers perspektiv. In: : . Paper presented at Den 9:e nationella konferensen i palliativ vård, Västerås, 24-26 september 2024.
Open this publication in new window or tab >>Implementering av Family Talk Intervention för barnfamiljer med palliativa vårdbehov: hälso- och sjukvårdskuratorers perspektiv
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2024 (Swedish)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Social Work
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-49534 (URN)
Conference
Den 9:e nationella konferensen i palliativ vård, Västerås, 24-26 september 2024
Available from: 2024-10-17 Created: 2024-10-17 Last updated: 2024-10-17Bibliographically approved
Kreicbergs, U., Landfeldt, E., Sejersen, T., Cortina Borja, M. & Udo, C. (2024). "Not only has she survived, but she lives a happy life": a nationwide study on parents' perspective on their child's treatment. In: : . Paper presented at The 4th Scientific International Congress on SMA in Ghent, 14 – 16 March 2024.
Open this publication in new window or tab >>"Not only has she survived, but she lives a happy life": a nationwide study on parents' perspective on their child's treatment
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2024 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Nursing
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-48166 (URN)
Conference
The 4th Scientific International Congress on SMA in Ghent, 14 – 16 March 2024
Projects
Familjers och personals erfarenheter, överväganden och ställningstaganden avseende nya medicinska möjligheter för barn med spinal muskelatrofi (SMA)
Available from: 2024-04-07 Created: 2024-04-07 Last updated: 2024-04-08Bibliographically approved
Kreicbergs, U., Landfeldt, E., Cortina, M., Sejersen, T. & Udo, C. (2024). Parents’ Experiences of a Novel Disease-Modifying Therapy for Spinal Muscular Atrophy in Sweden. In: : . Paper presented at 6th Maruzza International Congress on Paediatric Palliative Care, Rome, Italy, 16-18 October 2024.
Open this publication in new window or tab >>Parents’ Experiences of a Novel Disease-Modifying Therapy for Spinal Muscular Atrophy in Sweden
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2024 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Other Medical Sciences
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-49533 (URN)
Conference
6th Maruzza International Congress on Paediatric Palliative Care, Rome, Italy, 16-18 October 2024
Available from: 2024-10-17 Created: 2024-10-17 Last updated: 2024-10-17Bibliographically approved
Ivéus, K., Holm, M., Udo, C., Kreicbergs, U. & Lövgren, M. (2024). Parents Long-Term Retention of the Family Talk Intervention in Pediatric Oncology. In: : . Paper presented at 6th Maruzza International Congress on Paediatric Palliative Care, Rome, Italy, 16-18 October 2024.
Open this publication in new window or tab >>Parents Long-Term Retention of the Family Talk Intervention in Pediatric Oncology
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2024 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Social Work
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-49532 (URN)
Conference
6th Maruzza International Congress on Paediatric Palliative Care, Rome, Italy, 16-18 October 2024
Available from: 2024-10-17 Created: 2024-10-17 Last updated: 2024-10-17Bibliographically approved
Petersson, E.-L., Törnbom, K., Björkelund, C., Jerlock, M., Hange, D., Udo, C. & Svenningsson, I. (2024). Process evaluation of the CO-WORK-CARE model: Collaboration and a person-centred dialogue meeting for patients with common mental disorder in primary health care. Scandinavian Journal of Caring Sciences, 38(3), 602-613
Open this publication in new window or tab >>Process evaluation of the CO-WORK-CARE model: Collaboration and a person-centred dialogue meeting for patients with common mental disorder in primary health care
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2024 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 38, no 3, p. 602-613Article in journal (Refereed) Published
Abstract [en]

Rationale: To ensure optimal patient care based on evidence, it is crucial to understand how to implement new methods in practice. However, intervention studies often overlook parts of the implementation process. A comprehensive process evaluation is necessary to understand why interventions succeed or fail in specific contexts and to integrate new knowledge into daily practice. This evaluation examines the full implementation of the Co-Work-Care model in Swedish primary healthcare to identify strengths and weaknesses. 

Aim: This study aimed to evaluate the process of implementing the CO-WORK-CARE model that focuses on close collaboration and the use of a person-centred dialogue meeting in primary healthcare for patients on sick leave due to common mental disorders. 

Method: The CO-WORK-CARE model emphasises collaboration among the GP, rehabilitation coordinator and care manager, along with person-centred dialogue meetings involving employers. Following UK Medical Research Council guidelines, we conducted a process evaluation. Data from previous studies were reanalysed. We also analysed field notes and meeting notes using Malterud's qualitative method. 

Results: The evaluation identified key facilitators for model implementation, including regular visits by facilitators and guidance from the research physician. Peer support meetings also bolstered implementation. However, challenges emerged due to conflicts with existing structures and limitations in person-centred dialogue meetings. 

Conclusion: Adapting the CO-WORK-CARE model to Swedish primary care is feasible and beneficial, with collaboration among the care manager, rehabilitation coordinator and GP and person-centred dialogue meetings. Thorough preparations, ongoing facilitator and peer support and integrated information enhanced implementation efficiency, despite challenges posed by existing structures. 

Keywords
collaboration, common mental disorders, CO-WORK-CARE model, implementation, primary care, process evaluation, sick leave
National Category
General Practice Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Research Profiles 2009-2020, Health and Welfare
Identifiers
urn:nbn:se:du-48338 (URN)10.1111/scs.13268 (DOI)001217331100001 ()38718100 (PubMedID)2-s2.0-85192395105 (Scopus ID)
Available from: 2024-04-20 Created: 2024-04-20 Last updated: 2024-08-27Bibliographically approved
Projects
The Family Talk Intervention in clinical practice when a parent with dependent children or a child is severely ill: An effectiveness-implementation study [2021-00999_VR]; Marie Cederschiöld University; Publications
Ayoub, M., Lövgren, M., Kreicbergs, U. & Udo, C. (2025). Voices of Children with Cancer and Their Siblings in the Family Talk Intervention. Children, 12(3), Article ID 266. Eneslätt, M., Ayoub, M., Udo, C., Kreicbergs, U. & Lövgren, M. (2023). Mål och innehåll i samtal med familjer  inom stödprogrammet Family Talk Intervention i barnonkologi. In: : . Paper presented at Nationella konferensen i palliativ vård 2023, Malmö 2-4 oktober 2023. Thermaenius, I., Udo, C., Alvariza, A., Lundberg, T., Holm, M., Kreicbergs, U. & Lövgren, M. (2023). The Family Talk Intervention för barnfamiljer med palliativa vårdbehov: Hälso- och sjukvårdskuratorers initiala erfarenheter av hinder och möjligheter i användandet av interventionen. In: : . Paper presented at Nationella konferensen i palliativ vård 2023, Malmö, Sverige, 2-4 oktober 2023.
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-2853-0575

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