Background: To prevent deterioration after admission to the intensive care unit (ICU), and to improve rehabilitation, the ICU team should use digital technologies to provide comprehensive and practical information alongside personalised support for survivors and their family members. However, a knowledge gap exists on the users’ preferences for such an e-health platform in ICU follow-up services. Objectives: This study aims to explore the opinions and priorities for an e-health platform, including choices in digital elements, according to survivors of critical illness and their family members. Methods: A cross-sectional survey was used among members and other interested individuals of the Dutch volunteer organisation ‘Foundation Family- and Patient-Centred Intensive Care’. An investigator-developed questionnaire was disseminated through the newsletter and social media channels of the Foundation Family- and Patient-Centred Intensive Care. The results of this member consultation were analysed and reported as descriptive statistics on demographic variables and outcome measures in opinions and priorities of the participants. Results: Most of the 227 participants were female (76%), aged 46–55 years (33%), and completed higher education (70%). The participants reported high confidence in advice delivered through an e-health platform (72%). They prioritised the provision of a guide including relevant professionals who may support them during their recovery when using an e-health platform. Conclusions: ICU survivors prioritised the provision of relevant professionals who may support them during their recovery when using an e-health platform; however, selection bias means the population studied is likely to be more digitally connected than the general ICU population. Digital solutions could cater to their information and support needs. For family members, the highest priority reported was receiving help in managing their emotional distress. The development of an e-health platform considering the opinions and priorities of this target group could contribute to a personalised recovery trajectory promoting self-management while including digital elements addressing relevant ICU follow-up services.
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This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.
This paper is a report of a review conducted to provide an overview of the evidence in the literature on task-oriented training of stroke survivors and its relevance in daily nursing practice. Background: Stroke is the second leading cause of death and one of the leading causes of adult disability in the Western world. The use of neurodevelopmental treatment in the daily nursing care of stroke survivors does not improve clinical outcomes. Nurses are therefore exploring other forms of rehabilitation intervention, including task-oriented rehabilitation. Despite the growing number of studies showing evidence on task-oriented interventions, recommendations for daily nursing practice are lacking. A range of databases was searched to identify papers addressing taskoriented training in stroke rehabilitation, including Medline, CINAHL, Embase and the Cochrane Library of systematic reviews. Papers published in English between January 1996 and September 2007 were included. There were 42 papers in the final dataset, including nine systematic reviews. Review methods: The selected randomized controlled trials and systematic reviews were assessed for quality. Important characteristics and outcomes were extracted and summarized. Results: Studies of task-related training showed benefits for functional outcome compared with traditional therapies. Active use of task-oriented training with stroke survivors will lead to improvements in functional outcomes and overall healthrelated quality of life. Conclusion. Generally, task-oriented rehabilitation proved to be more effective. Many interventions are feasible for nurses and can be performed in a ward or at home. Nurses can and should play an important role in creating opportunities to practise meaningful functional tasks outside of regular therapy sessions.
In the Netherlands, 125 people suffer a stroke every day, which annually results in 46.000 new stroke patients Stroke patients are confronted with combinations of physical, psychological and social consequences impacting their long term functioning and quality of live. Fortunately many patients recover to their pre-stroke level of functioning, however, almost half of them never will. Consequently, rehabilitation often means that patients need to adapt to a new reality in their lives, requiring not only physical but also psychosocial adjustments. Nurses play a key role during rehabilitation of stroke patients. However, when confronted with psychosocial problems, they often feel insecure about identifying the specific psycho-social needs of the individual patient and providing adequate care. In our project ‘Early Detection of Post-Stroke Depression’, (SIA RAAK; 2010-12-36P), we developed a toolkit focusing on early identification of depression after stroke continued with interventions nurses can use during hospitalisation. During this project it became clear that evidence regarding possible interventions is scarce and inclusive. Moreover feasibility of interventions is often not confirmed. Our project showed that during the period of hospital admission patients and health care providers strongly focus on surviving the stroke and on the physical rehabilitation. Therefore, we concluded that to make one step beyond we first have to go one step back. To strengthen psychosocial care for patients after stroke we have to add, reconsider and shape knowledge in context of health care practices in a systematic way, resulting in evidence based and practice informed stepping stones. With this project we aim to collect these stepping stones and develop a nursing care programme that improves psychosocial well-being of patients after stroke, is tailored to the particular concerns and needs of patients, and is considered feasible for use in the usual care process of nurses in the stroke rehabilitation pathway.
