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Steindal, S. A., Nes, A. A., Godskesen, T., Holmen, H., Winger, A., Österlind, J., . . . Klarare, A. (2023). Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: Systematic Mixed Studies Review. Journal of Medical Internet Research, 25, Article ID e43684.
Open this publication in new window or tab >>Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: Systematic Mixed Studies Review
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2023 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e43684Article in journal (Refereed) Published
Abstract [en]

Background: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth in home-based palliative care.

Objective: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients’ use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients.

Methods: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis.

Results: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth.

Conclusions: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.

Place, publisher, year, edition, pages
JMIR Publications, 2023
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-498603 (URN)10.2196/43684 (DOI)001009319100004 ()
Available from: 2023-03-17 Created: 2023-03-17 Last updated: 2024-01-17Bibliographically approved
Godskesen, T., Björk, J. & Juth, N. (2023). Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses' experiences. Trials, 24, Article ID 801.
Open this publication in new window or tab >>Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses' experiences
2023 (English)In: Trials, E-ISSN 1745-6215, Vol. 24, article id 801Article in journal (Refereed) Published
Abstract [en]

Background: Clinical research nurses (CRNs) have first-hand experience with ethical challenges and play a crucial role in upholding ethical conduct and adherence to the principles of informed consent in clinical research. This study explores the ethical challenges encountered by CRNs in the process of obtaining informed consent for clinical research.

Methods: A qualitative exploratory design. Semistructured interviews (n = 14) were conducted with diverse CRNs in Sweden. These CRNs covered a wide range of research fields, including pharmaceutical and academic studies, interventions, and observational research, spanning different trial phases, patient categories, and medical conditions. The interviews were analysed using inductive qualitative content analysis.

Results:The analysis identified three main categories: (i) threats to voluntariness, (ii) measures to safeguard voluntariness, and (iii) questionable exclusion of certain groups. CRNs face challenges due to time constraints, rushed decisions, information overload, and excessive reliance on physicians' recommendations. Overestimating therapeutic benefits in stages of advanced illness emerged as a risk to voluntariness. CRNs outlined proactive solutions, such as allowing ample decision-making time and offering support, especially for terminally ill patients. Concerns were also voiced about excluding certain demographics, such as those with language barriers or cognitive impairments.

Conclusions: In conclusion, upholding ethical research standards requires recognising various factors affecting patient voluntariness. Researchers and CRNs should prioritise refining the informed consent process, overcoming participation challenges, and aligning scientific rigour with personalised care. Additionally, a concerted effort is vital to meet the diverse needs of patient populations, including equitable inclusion of individuals with language barriers or cognitive limitations in clinical studies. These findings have significant implications for enhancing the ethics of clinical research and advancing person-centred care.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Clinical research, Informed consent, Nursing ethics, Research ethics, Qualitative content analysis
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-519111 (URN)10.1186/s13063-023-07844-6 (DOI)001123743900003 ()38082434 (PubMedID)
Funder
Uppsala University
Available from: 2024-01-03 Created: 2024-01-03 Last updated: 2024-01-17Bibliographically approved
Norbäck, K., Höglund, A. T., Godskesen, T. & Frygner Holm, S. (2023). Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.. BMC Medical Ethics, 24(1), 23, Article ID 23.
Open this publication in new window or tab >>Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.
2023 (English)In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 24, no 1, p. 23-, article id 23Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.

METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.

RESULTS: The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.

CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Assent, Ethical challenges, Ethics, Healthcare professionals, Informed consent, Paediatric oncology, Qualitative research, Research recruitment, Shared decision-making
National Category
Nursing Medical Ethics Ethics
Research subject
Ethics; Pediatrics
Identifiers
urn:nbn:se:uu:diva-500405 (URN)10.1186/s12910-023-00901-4 (DOI)36918868 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, PR2019-0107
Available from: 2023-04-17 Created: 2023-04-17 Last updated: 2024-01-15
Godskesen, T., Vie, K. J., Bülow, W., Holmberg, B., Helgesson, G. & Eriksson, S. (2023). How do journals publishing palliative and end‐of‐life care research report ethical approval and informed consent?. Learned Publishing, 36(4), 554-563
Open this publication in new window or tab >>How do journals publishing palliative and end‐of‐life care research report ethical approval and informed consent?
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2023 (English)In: Learned Publishing, ISSN 0953-1513, E-ISSN 1741-4857, Vol. 36, no 4, p. 554-563Article in journal (Refereed) Published
Abstract [en]

This study explores how papers published in international journals in palliative and end-of-life care report ethical approval and informed consent. A literature search following PRISMA guidelines was conducted in PubMed, the Web of Science Core Collection, Scopus, the ProQuest Social Science Premium Collection, PsycINFO, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). A total of169 empirical studies from 101 journals were deductively coded and analysed. The results showed that 5% of publications provided no information on ethical approval, 12% reported minimal information, 56% reported rudimentary information, and 27% reported comprehensive details. We also found that 13% did not report any information on informed consent, 17% reported minimal information, 50% reported rudimentary information, and 19% reported comprehensive details. The prevalence of missing and incomplete ethical statements and inadequate reporting of informed consent processes in recent publications raises concerns and highlights the need for improvement. We suggest that journals advocate high reporting standards and potentially reject papers that do not meet  ethical  requirements,  as  this is the quickest path to improvement.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
National Category
Ethics
Identifiers
urn:nbn:se:uu:diva-511260 (URN)10.1002/leap.1580 (DOI)001060429400001 ()
Funder
Uppsala UniversitySwedish Research Council, 2021-02827
Available from: 2023-09-11 Created: 2023-09-11 Last updated: 2024-01-26Bibliographically approved
Beyermann, A., Asp, M., Godskesen, T. & Söderman, M. (2023). Nurses' challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study. International Journal of Qualitative Studies on Health and Well-being, 18(1), Article ID 2238984.
Open this publication in new window or tab >>Nurses' challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study
2023 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, no 1, article id 2238984Article in journal (Refereed) Published
Abstract [en]

Purpose: Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses’ (RNs’) experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC).

Methods: A qualitative explorative design. Interviews were conducted with RNs (n = 11) from five SPHCs in Sweden and analysed using qualitative content analysis.

Results: The results emerged in the following categories:” To support in an increasingly difficult everyday life”, based on the sub-categories: “Creating a trusting relationship”, “Balancing between the needs of patients and their families”, and “Sharing knowledge about dying to the families”;” To support in emotionally challenging situations”, based on the sub-categories: “Harbouring family members’ difficult feelings”, “Providing support even though the situation is unpleasant” and “Being able to give support by receiving confirmation and support from others”.

Conclusions: RNs working in SPHC have an important role in providing support in several ways to the families of patients with ALS, through facilitating their everyday life and giving emotional support when needed, based on the needs of both patients and their families.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
ALS, caregivers, family, home care nursing, nurses experience, palliative care, relatives, qualitative
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-508368 (URN)10.1080/17482631.2023.2238984 (DOI)001032784700001 ()37490576 (PubMedID)
Available from: 2023-07-29 Created: 2023-07-29 Last updated: 2023-08-15Bibliographically approved
Norberg Wieslander, K., Höglund, A. T., Frygner Holm, S. & Godskesen, T. (2023). Research ethics committee members’ perspectives on paediatric research: a qualitative interview study. Research Ethics, 0(0)
Open this publication in new window or tab >>Research ethics committee members’ perspectives on paediatric research: a qualitative interview study
2023 (English)In: Research Ethics, ISSN 1747-0161, E-ISSN 2047-6094, Research Ethics, Vol. 0, no 0Article in journal (Refereed) Published
Abstract [en]

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.

Keywords
paediatric research, research ethics, human research ethics committee, ethical review board, recruitment, informed consent, assent, qualitative research
National Category
Medical Ethics
Research subject
Ethics; Medical Science; Pediatrics
Identifiers
urn:nbn:se:uu:diva-504898 (URN)10.1177/17470161231179663 (DOI)
Funder
Swedish Childhood Cancer Foundation, PR2019-0107
Available from: 2023-06-16 Created: 2023-06-16 Last updated: 2023-06-16
Godskesen, T. (2023). Vi må ta en diskusjon om publiseringsvanvidd: Fagfellevurdering blir offeret for forskeres publiseringsiver. Dagens medisin, 24/11
Open this publication in new window or tab >>Vi må ta en diskusjon om publiseringsvanvidd: Fagfellevurdering blir offeret for forskeres publiseringsiver
2023 (Norwegian)In: Dagens medisin, ISSN 1501-4290, E-ISSN 1501-4304, Vol. 24/11Article in journal, News item (Other (popular science, discussion, etc.)) Published
Keywords
Etikk, forskningsetikk
National Category
Ethics
Identifiers
urn:nbn:se:uu:diva-518176 (URN)
Available from: 2023-12-17 Created: 2023-12-17 Last updated: 2024-02-21Bibliographically approved
Godskesen, T., Frygner Holm, S., Höglund, A. T. & Eriksson, S. (2023). YouTube as a source of information on clinical trials for paediatric cancer. Information, Communication and Society, 26(4), 716-729
Open this publication in new window or tab >>YouTube as a source of information on clinical trials for paediatric cancer
2023 (English)In: Information, Communication and Society, ISSN 1369-118X, E-ISSN 1468-4462, Vol. 26, no 4, p. 716-729Article in journal (Refereed) Published
Abstract [en]

Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
YouTube; social media; clinical trials; paediatric cancer; e-learning
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-453112 (URN)10.1080/1369118X.2021.1974515 (DOI)000693941300001 ()
Available from: 2021-09-14 Created: 2021-09-14 Last updated: 2023-05-22Bibliographically approved
Holmberg, B. & Godskesen, T. (2022). Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study. BMC Palliative Care, 21, Article ID 134.
Open this publication in new window or tab >>Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study
2022 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 21, article id 134Article in journal (Refereed) Published
Abstract [en]

Background: Among a growing population of older persons, many afected by multiple diseases and complexneeds, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses andfrail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this studywas to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situationsat the end of life in a nursing home.

Methods: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in anurban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of feldwork,including participant observation and interviews. Observations and digitally recorded interviews were analysedthematically. Five public community stakeholders contributed to the analysis by discussing preliminary results andclinical implications in a focus group.

Results: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodilycare, were identifed: Coping with the impact of workplace demands; Interacting in dialogue and communication;Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort.

Conclusions: The fndings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriersincluded lack of resources, inefective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility forperforming their tasks in response to residents’ vulnerability. We therefore suggest that moral deliberation over issuesof communication, compassion, decision-making, and behavior, with particular consideration for the care relationship.To further improve the quality of care, organisations must provide resources for the building of relationships, as wellas time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation ofethically grounded palliative care

Place, publisher, year, edition, pages
Springer NatureSpringer Nature, 2022
National Category
Nursing
Research subject
Ethics
Identifiers
urn:nbn:se:uu:diva-481094 (URN)10.1186/s12904-022-01024-0 (DOI)000829031500002 ()35869514 (PubMedID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, Dnr 2020-01563Uppsala University
Available from: 2022-08-03 Created: 2022-08-03 Last updated: 2024-01-17Bibliographically approved
Godskesen, T., Eriksson, S., Oermann, M. O. & Gabrielsson, S. (2022). Predatory conferences: a systematic scoping review. BMJ Open, 12(11), Article ID e062425.
Open this publication in new window or tab >>Predatory conferences: a systematic scoping review
2022 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 12, no 11, article id e062425Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To systematically map the scholarly literature on predatory conferences and describe the presentstate of research and the prevalent attitudes about these conferences.

METHODS: This scoping review follows Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases were searched (PubMed/Medline, Web of Science, Scopus and ProQuest SocialSciences Premium Collection). In addition, the included studies’ reference lists were scanned for additional papers  not found in the searches. Peer-reviewed publications were included irrespective of study design. Letters and commentary were included if they were peer reviewed. Editorials and literature reviews were excluded.

RESULTS: From 809 initial publications, 20 papers were included in the review, from 12 countries and covered a wide range of science disciplines, from nursing/medicine to energy/technology and computer science. More than half were empirical and published after 2017. In most papers, a definition of the term predatory conferences was put forward. Spam email invitations with flattering language were the most common characteristics, and the conferences were often hosted by unknown organisations that used copied pictures without permission. High fees, lack of peer review, and a multidisciplinary scope were signal features. All papers explicitly or implicitly suggested possible reasons for participating in predatory conferences. Some reasons were related to the overall context of academic work, the nature of predatory conferences (eg, researchers falling prey to misleading information about a conference or choosing a conference based on an attractive location) and the personal characteristics of researchers. Only one paper reported empirically identified reasons for participating in predatory conferences. The three countermeasures proposed most frequently to deal with predatory conferences were increasing education, emphasising responsibilities of universities and funders, and publishing lists of predatory publishers associated with conferences.

CONCLUSIONS: This review identified a scarcity of research concerning predatory conferences. Future empirical as well as fully analytical research should be encouraged by funders, journals and research institutions.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2022
National Category
Ethics
Research subject
Ethics
Identifiers
urn:nbn:se:uu:diva-489757 (URN)10.1136/bmjopen-2022-062425 (DOI)000924552900004 ()36450423 (PubMedID)
Available from: 2022-12-04 Created: 2022-12-04 Last updated: 2023-08-28Bibliographically approved
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ORCID iD: ORCID iD iconorcid.org/0000-0001-6011-6740

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