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Patient engagement is the active collaboration between patient partners and health system partners towards a goal of making decisions that centre patient needs—thus improving experiences of care, and overall effectiveness of health services in alignment with the Quintuple Aim. An important but challenging aspect of patient engagement is including diverse perspectives particularly those experiencing health inequities. When such populations are excluded from decision-making in health policy, practice and research, we risk creating a healthcare ecosystem that reinforces structural marginalisation and perpetuates health inequities.
Despite the growing body of literature on knowledge coproduction, few have addressed the role of power relations in patient engagement and offered actionable steps for engaging diverse patients in an inclusive way with a goal of improving health equity. To fill this knowledge gap, we draw on theoretical concepts of power, our own experience codesigning a novel model of patient engagement that is equity promoting, Equity Mobilizing Partnerships in Community, and extensive experience as patient partners engaged across the healthcare ecosystem. We introduce readers to a new conceptual tool, the Power Wheel, that can be used to analyse the interspersion of power in the places and spaces of patient engagement.
As a tool for ongoing praxis (reflection +action), the Power Wheel can be used to report, reflect and resolve power asymmetries in patient-partnered projects, thereby increasing transparency and illuminating opportunities for equitable transformation and social inclusion so that health services can meet the needs and priorities of all people.
BioMD-Y is a comprehensive biobank study of children and adolescents with major depression (MD) and their healthy peers in Germany, collecting a host of both biological and psychosocial information from the participants and their parents with the aim of exploring genetic and environmental risk and protective factors for MD in children and adolescents.
Children and adolescents aged 8–18 years are recruited to either the clinical case group (MD, diagnosis of MD disorder) or the typically developing control group (absence of any psychiatric condition).
To date, four publications on both genetic and environmental risk and resilience factors (including FKBP5, glucocorticoid receptor activation, polygenic risk scores, psychosocial and sociodemographic risk and resilience factors) have been published based on the BioMD-Y sample.
Data collection is currently scheduled to continue into 2026. Research questions will be further addressed using available measures.
This study used causal inference to estimate the longitudinal effects of contagion in cohabitants and family members on university students’ mental health and academic self-efficacy during the COVID-19 pandemic.
A prospective longitudinal study including a baseline online measurement in May 2020, and online follow-ups after 5 months and 10 months. Participants were recruited through open-access online advertising.
Public universities and university colleges in Sweden.
The analytical sample included 2796 students.
Contagion in cohabitants and in family members was assessed at baseline and at the 5-month follow-up. Mental health and academic self-efficacy were assessed at the 5-month and 10-month follow-ups.
Mild symptoms reported in cohabitants at baseline resulted in negative mental health effects at follow-up 5 months later, and mild baseline symptoms in family members resulted in negative effects on academic self-efficacy at follow-ups both 5 and 10 months later.
Notwithstanding the lack of precision in estimated effects, the findings emphasise the importance of social relationships and the challenges of providing students with sufficient support in times of crisis.
To describe how family members of critically ill patients experienced the COVID-19 visiting restrictions in Sweden.
In Sweden, the response to COVID-19 was less invasive than in many other countries. However, some visiting restrictions were introduced for intensive care units, with local variations. Although there is a growing body of literature regarding healthcare professionals' and family caregivers' perspectives on visiting restriction policies, there may be inter-country differences, which remain to be elucidated.
This study has a qualitative descriptive design. Focus group interviews with 14 family members of patients treated for severe COVID-19 infection were conducted. The interviews took place via digital meetings during the months after the patients' hospital discharge. Qualitative content analysis was used to interpret the interview transcripts. Reporting of the study followed the COREQ checklist.
Two categories—dealing with uncertainty and being involved at a distance—described family members' experiences of coping with visiting restrictions during the COVID-19 pandemic. These restrictions were found to reduce family members' ability to cope with the situation. Communication via telephone or video calls to maintain contact was appreciated but could not replace the importance of personal contact.
Family members perceived that the visiting restriction routines in place during the COVID-19 pandemic negatively influenced their ability to cope with the situation and to achieve realistic expectations of the patients' needs when they returned home.
This study suggests that, during the COVID-19 pandemic, the visiting restrictions were experienced negatively by family members and specific family-centred care guidelines need to be developed for use during crises, including the possibility of regular family visits to the ICU.
None in the conceptualisation or design of the study.
To explore how parents experienced their child with delirium and how parents viewed our delirium management bundle.
We conducted a qualitative exploratory descriptive study using semi-structured individual or dyad interviews.
Twelve semi-structured interviews with 16 parents of 12 critically ill children diagnosed with delirium in a paediatric intensive care unit were conducted from October 2022 to January 2023 and analysed through a reflexive thematic analysis.
We generated five themes: (1) knowing that something is very wrong, (2) observing manifest changes in the child, (3) experiencing fear of long-term consequences, (4) adding insight to the bundle, and (5) family engagement.
The parents in our study were able to observe subtle and manifest changes in their child with delirium. This caused fear of lasting impact. The parents regarded most of the interventions in the delirium management bundle as relevant but needed individualization in the application. The parents requested more information regarding delirium and a higher level of parent engagement in the care of their child during delirium.
This paper contributes to understanding how parents might experience delirium in their critically ill child, how our delirium management bundle was received by the parents, and their suggestions for improvement. Our study deals with critically ill children with delirium, their parents, and staff working to prevent and manage paediatric delirium (PD) in the paediatric intensive care unit.
The consolidated criteria for reporting qualitative research guidelines were used to ensure the transparency of our reporting.
No patient or public contribution to the research design.
- It increases awareness of the parent's perspective on PD in critically ill children. - It shows how PD might affect parents, causing negative emotions such as distress, frustration, and fear of permanent damage. - It shows that the parents in our study, in addition to the care bundle, requested more information on delirium and more involvement in the care of their delirious child.
The study aimed to explore the experiences of care and recovery among older patients treated for physical trauma.
A qualitative study with a constructivist grounded theory design.
Fifteen in-depth interviews with older adults recovering from physical trauma were conducted and analysed between 2019 and 2023, in accordance with grounded theory methodology.
The findings show that for older patients who suffered physical trauma, the core category was the strive to recapture autonomy. This was achieved by means of Adaptation, Reflection and Interactions, which constitute the three main categories. Recovery involves facing and navigating various new life challenges, such as increased dependency on others, managing difficult symptoms and adapting in various ways to everyday life. The recovery process was influenced by fear, hope and the attitude towards new challenges.
Older adults being cared for after a traumatic event have a difficult path to recovery ahead of them. Dealing with increased unwanted dependency on others was a main concern for the participants. Undertreated symptoms can lead to undesired isolation, delayed recovery and further increase unwanted dependency. On the other hand, hope, which was defined as having a positive approach to life and longing for the future, was a strong accelerating factor in the recovery process.
As a result of this study, we have established that older patients experience the initial period after trauma as difficult and that support in the initial phase can be helpful when returning home. As healthcare services are under increasing pressure because of an ageing population, this study contributes by addressing an understudied population and clarifying their concerns.
Reporting adheres to the COREQ (COnsolidated criteria for REporting Qualitative research) Checklist.
No patient or public involvement.
In routine psychiatric care in Stockholm, Sweden, a comprehensive therapist-guided intervention for clinically significant health anxiety is implemented. However, there is a need for more easily accessible self-care interventions to improve treatment dissemination. This study aimed to transform an existing therapist-guided digital intervention into a self-care intervention, reducing patient burden and used clinical resources while maintaining quality and safety.
An uncontrolled feasibility study.
Conducted at Karolinska Institutet, a medical university in Sweden, with nationwide recruitment trough online advertisements.
Twenty-five adults used the self-care intervention and underwent telephone assessments, along with completing self-rated questionnaires.
The newly developed 8-week self-care intervention was designed to be user-friendly without therapist guidance, and to facilitate high levels of behavioural engagement.
Indicators of quality and safety, including changes in health anxiety severity (primary), clinician time, participant adherence, perceived credibility/satisfaction with the intervention and adverse events, were benchmarked against a previous study of the more comprehensive intervention it was based on.
Compared with the original guided intervention, the self-care intervention was condensed in terms of text (up to 70% less reading), duration (8 weeks instead of 12) and number of exercises. Quality indicators were similar to the original version. Most participants worked actively with core components in the self-care intervention. Within-group effects on health anxiety from pretreatment to the 3-month follow-up were large (g=1.37; 95% CI 0.74 to 2.00). No serious adverse events were reported.
This brief digital self-care intervention shows potential for increasing access to treatment for individuals with health anxiety while reducing the burden on patients and clinical resources. Future studies should investigate the optimal type of intervention and support for different individuals, and if non-inferiority can be established.
by Kaisa Fritzell, Berith Hedberg, Anke Woudstra, Anna Forsberg, Marika Sventelius, Anders Kottorp, Anna Jervaeus
BackgroundSweden has a long tradition of organized national population-based screening programmes. Participation rates differ between programmes and regions, being relatively high in some groups, but lower in others. To ensure an equity perspective on screening, it is desirable that individuals make an informed decision based on knowledge rather than ignorance, misconceptions, or fear. Decision Aids (DAs) are set to deliver information about different healthcare options and help individuals to visualize the values associated with each available option. DAs are not intended to guide individuals to choose one option over another. The advantage of an individual Decision Aid (iDA) is that individuals gain knowledge about cancer and screening by accessing one webpage with the possibility to communicate with health professionals and thereafter make their decision regarding participation. The objective is therefore to develop, implement and evaluate a digital iDA for individuals invited to cancer screening in Sweden.
MethodsThis study encompasses a process-, implementation-, and outcome evaluation. Multiple methods will be applied including focus group discussions, individual interviews and the usage of the think aloud technique and self-reported questionnaire data. The project is based on The International Patient Decision Aid Standards (IPDAS) framework and the proposed model development process for DAs. Individuals aged 23–74, including women (the cervical-, breast- and CRC screening module) and men (the CRC screening module), will be included in the developmental process. Efforts will be made to recruit participants with self-reported physical and mental limitations, individuals without a permanent residence and ethnic minorities.
DiscussionTo the best of our knowledge, the present study is the first attempt aimed at developing an iDA for use in the Swedish context. The iDA is intended to facilitate shared decision making about participation in screening. Furthermore, the iDA is expected to increase knowledge and raise awareness about cancer and cancer screening.
Patient or public contributionLay people are involved throughout the whole development and implementation process of the digital DA.
Trial registrationNCT05512260.
Head and neck cancer is the eighth most common cancer in the UK. Current standard of care treatment for patients with recurrent/metastatic squamous cell head and neck carcinoma (HNSCC) is platinum-based chemotherapy combined with the anti-epidermal growth factor receptor (anti-EGFR) monoclonal antibody, cetuximab. However, most patients will have poor median overall survival (OS) of 6–9 months despite treatment. HNSCC tumours exhibit an immune landscape poised to respond to immunotherapeutic approaches, with most tumours expressing the immunosuppressive receptor programmed death-ligand 1 (PD-L1). We undertook the current study to determine the safety and efficacy of avelumab, a monoclonal antibody targeting the interaction between PD-L1 and its receptor on cytotoxic T-cells, in combination with cetuximab.
This is a multi-centre, single-arm dose de-escalation phase II safety and efficacy study of avelumab combined with cetuximab; the study was to progress to a randomised phase II trial, however, the study will now complete after the safety run-in component. Up to 16 participants with histologically/cytologically recurrent/metastatic squamous cell carcinoma (including HNSCC) who have not received cetuximab previously will be recruited. All patients will receive 10 mg/kg avelumab and cetuximab (500, 400 or 300 mg/m2 depending on the cohort open at time of registration) on days 1 and 15 of 4-week cycles for up to 1 year, (avelumab not given cycle 1 day 1). A modified continual reassessment method will be used to determine dose de-escalation. The primary objective is to establish the safety of the combination and to determine the optimum dose of cetuximab. Secondary objectives include assessing evidence of antitumour activity by evaluating response rates and disease control rates at 6 and 12 months as well as progression-free and OS.
Approval granted by City and East REC (18/LO/0021). Findings will be published in peer-reviewed journals and disseminated at conferences.
Training programmes for obstetrics and gynaecology (O&G) and general surgery (GS) vary significantly, but both require proficiency in laparoscopic skills. We sought to determine performance in each specialty.
Prospective, observational study.
Health Education England North-West, UK.
47 surgical trainees (24 O&G and 23 GS) were subdivided into four groups: 11 junior O&G, 13 senior O&G, 11 junior GS and 12 senior GS trainees.
Trainees were tested on four simulated laparoscopic tasks: laparoscopic camera navigation (LCN), hand–eye coordination (HEC), bimanual coordination (BMC) and suturing with intracorporeal knot tying (suturing).
O&G trainees completed LCN (p
GS trainees performed better than O&G trainees in core laparoscopic skills, and the structure of O&G training may require modification.
ClinicalTrials.gov Registry (NCT05116332).
FreshRSS 