Background: In intensive care units, critically ill patients often require life-sustaining interventions. When these no longer benefit the patient, care is often transferred to end-of-life care. Family members may find themselves in a stressful situation, since they often act as proxies in decision-making processes, and support the patient nearing the end of life, while also coping with their own grief. The aim of this study is to investigate bereaved family members' satisfaction with care, decision-making, the patients' last hours of life, and their own self-rated health in end-of-life care in an intensive care setting.

Method: A descriptive cross-sectional design with the questionnaire Family Satisfaction with Care in the Intensive care unit (FS-ICU 24) and its subscales FS-ICU Care and FS-ICU Decision-making was used: Bereaved family members from seven intensive care units in an urban region in Sweden participated. Data were analysed using descriptive and inferential statistics.

Results: Bereaved family members (n=141) reported an overall satisfaction with the end-of-life care given, summary score 77.6 (SD=20.4) on the FS-ICU Total. For the subscale FS-ICU Care the summary score were 79.5 (SD=19.9), and for FS-ICU Decision-making 74.8 (SD=23.3). Dissatisfaction were reported by 12.3% (n=17) of the family members with insufficient emotional support, 14.7% (n=20) within consistent information, and 17% (n=24) with limited control over patients' care. Family members who rated their health as worse compared to a year ago, reported lower satisfaction in FS ICU Decision-making (p=0.05).

Conclusion: This study shows an overall high satisfaction with end-of-life care in ICUs with summary scores in theupper quarter as measured by the FS-ICU 24. This study also uncovers a lack of attention to theindividual needs of family members. Dissatisfaction stemmed from the items concerning insufficientemotional support, inconsistent information, and limited control over patients´ care. These findingsunderscore the importance of paying attention to family members who express dissatisfaction withcare and decision-making and items that received the lowest satisfaction scores. It is of paramountimportance that when patients are cared for in ICU at the end of life, family members needs areidentified and measures are taken to meet those needs.

People in homelessness face significant health inequities, with tri-morbidity, exposure to violence, substance use- and post-traumatic stress disorder. The aim of this scoping review was to describe treatments for trauma-related conditions for persons in homelessness. Systematic searches were performed in three databases: PubMed, PsycInfo and Scopus, guided by the PRISMA checklist. Nine studies fulfilled the criteria and were included in the review. Results show no randomized studies specifically focusing on treatment of trauma-related conditions for people in homelessness. Studies described interventions or programs that focused on consolidating and developing participants’ own strengths and skills to better navigate life with the challenges of homelessness, trauma, and PTSD. Treatment of trauma-related conditions may have positive effects for people in homelessness, as for others. Multimodal treatments, developing personal strengths and skills for people in homelessness, show potential to decrease trauma symptoms, however, more robust studies are needed for inferences and recommendations. 

Background: In Swedish intensive care units, nine percent of patients do not survive despite receiving advanced life-sustaining treatments. As these patients transition to end-of-life care, ethical considerations may become paramount.

Aim: To explore the ethical challenges that critical care nurses encounter when caring for patients at the end of life in an intensive care context.

Research design: The study used a qualitative approach with an interpretive descriptive design.

Research context and participants: Twenty critical care nurses from eight intensive care units in an urban region in Sweden were interviewed, predominately women with a median age of fifty-one years.

Ethical considerations: This study was approved by The Swedish Ethics Review Authority.

Findings: Critical care nurses described encountering ethical challenges when life-sustaining treatments persisted to patients with minimal survival prospects and when administering pain-relieving medications that could inadvertently hasten patients' deaths. Challenges also arose when patients expressed a desire to withdraw life-sustaining treatments despite the possibility of recovery, or when family members wanted to shield patients from information about a poor prognosis; these wishes occasionally conflicted with healthcare guidelines. The critical care nurses also encountered ethical challenges when caring for potential organ donors, highlighting the balance between organ preservation and maintaining patient dignity.

Conclusion: Critical care nurses encountered ethical challenges when caring for patients at the end of life. They described issues ranging from life-sustaining treatments and administration of pain-relief, to patient preferences and organ donation considerations. Addressing these ethical challenges is essential for delivering compassionate person-centered care, and supporting family members during end-of-life care in an intensive care context.

Marie Cederschiöld högskola (MCHS) och Sophiahemmet Högskola (SHH) samarbetar kring en gemensam seminarieserie i publiceringsetik. Seminarierna vänder sig till högskolornas doktorander, forskare och bibliotekarier. Med liten arbetsinsats från en grupp med forskare och bibliotekarier har vi en bra samverkan både mellan våra högskolor och mellan olika professioner på högskolorna.

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.

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.

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.

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.

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.