Patients' Experiences With Digitalization in the Health Care System: Qualitative Interview Study.

BACKGROUND: The digitalization of public and health sectors worldwide is fundamentally changing health systems. With the implementation of digital health services in health institutions, a focus on digital health literacy and the use of digital health services have become more evident. In Denmark, public institutions use digital tools for different purposes, aiming to create a universal public digital sector for everyone. However, this digitalization risks reducing equity in health and further marginalizing citizens who are disadvantaged. Therefore, more knowledge is needed regarding patients' digital practices and experiences with digital health services. OBJECTIVE: This study aims to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients in the neurology field and address the following research questions: (1) How do patients use digital services and digital tools? (2) How do they experience them? METHODS: We used a qualitative design with a hermeneutic approach. We conducted 31 semistructured interviews with patients who were hospitalized or formerly hospitalized at the department of neurology in a hospital in Denmark. The interviews were audio recorded and subsequently transcribed. The text from each transcribed interview was analyzed using manifest content analysis. RESULTS: The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools. Our findings show that digital tools were experienced differently, and specific conditions were important for the possibility of engaging in digital practices, including having access to social resources; possessing physical, cognitive, and communicative capabilities; and feeling motivated, secure, and comfortable. These prerequisites were necessary for participants to have positive experiences using digital tools in the health care system. Those who did not have these prerequisites experienced challenges and, in some cases, felt left out. CONCLUSIONS: Experiences with digital practices and digital health services are complex and multifaceted. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges. To ensure that digitalization does not create inequities in health, it is necessary for developers and institutions to be aware of the differences in digital health literacy, focus on simplifying communication with patients and next of kin, and find flexible solutions for citizens who are disadvantaged.

Nordic nurses' areas of research during and related to the COVID-19 pandemic. A scoping review with recommendations for evidence-based practice.

BACKGROUND: The knowledge of the landscape of COVID-19 research performed by nurses in hospitals and health services is scarce. It is important to identify, map and share knowledge and thus provide a better understanding of the important research performed by nurses. AIMS: To provide a comprehensive overview of Nordic nurses' focus areas of research during and related to the COVID-19 pandemic and to extract knowledge on recommendations for future evidence-based practice. METHODS: The electronic databases of MEDLINE (via PubMed), CINAHL (via EBSCO) and Scopus (via Elsevier) were searched for studies describing all areas of nursing during and related to the COVID-19 pandemic conducted in the Nordic countries. Studies conducted by a nurse as the first or last author and published from March 2020 to March 2022 were included in the scoping review. The protocol for the review is registered at Open Science Framework (https://osf.io/f8kuq). RESULTS: Of 8412 studies found in the comprehensive search, 119 studies met the inclusion criteria. The studies were written by nurses from Denmark (42%), Sweden (31%), Norway (20%), Finland (6%) and Iceland (1%). The majority of studies (39%) covered patients' and relatives' experiences of visiting restrictions and social distancing and relatives' communications with healthcare professionals. Twenty-six per cent of included studies covered healthcare professionals' experiences of caring for patients infected with COVID-19, working during the pandemic and suffering from the consequences of both. LINKING EVIDENCE TO ACTION: The recommendations of evidence-based practice for future pandemics show that social distancing for disease prevention must be provided while considering the human consequences of social distancing. Special training is also recommended for healthcare professionals caring for COVID-19 patients accompanied by psychosocial support for their mental well-being. Additionally, virtual contact is an important supplement to personal treatment and face-to-face contact during social restrictions.

Wants and needs for involvement reported by relatives of patients with a malignant brain tumor: a scoping review.

OBJECTIVE: The objective of this scoping review was to identify and map the breadth of available evidence on relatives' wants and needs for involvement throughout the course of the disease in patients with a malignant brain tumor. INTRODUCTION: Patients diagnosed with a malignant brain tumor often have a poor prognosis, including a rapid progression of the disease, with changing physical, cognitive, and psychosocial symptoms. The caregiver burden is described as multifaceted, and relatives often neglect their own physical, emotional, and social needs. INCLUSION CRITERIA: This review included studies that defined or assessed the wants and needs for involvement of relatives of patients with a malignant brain tumor throughout the disease and treatment trajectory. The populations were relatives of patients with a malignant brain tumor in various settings. METHODS: The JBI methodology for scoping reviews was followed in accordance with a previously published a priori protocol. An extensive search was conducted in the MEDLINE (PubMed), CINAHL (EBSCOhost), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in March 2022. This review was limited to studies published since January 2010 in English, German, or Scandinavian languages. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. Textual data mapping of wants and needs for involvement were synthesized narratively using a basic qualitative content analysis. The review findings are reported as a descriptive summary, with tables and figures to support the data. RESULTS: The search identified 3830 studies, of which 10 were included. The studies were conducted in 6 countries and were published between 2010 and 2018. In total, 4 studies applied a qualitative study design that used semi-structured interviews, 2 studies applied a mixed methods design that used questionnaires and semi-structured interviews, 1 study applied a multi-method design, and 3 studies used a quantitative survey. Research was conducted in a variety of settings, including community palliative care, inpatient centers, outpatient, home, and post-bereavement. The findings showed that most of the relatives' needs were related to the caregiver role. The relatives were actively involved in the patients' disease and treatment trajectories. However, relatives were often required to adopt the caregiver role and a large amount of responsibility at short notice. Thus, they expressed a need for a stronger connection with health care professionals because their needs changed as rapidly as the disease progressed. Relatives also had a need related to maintaining hope, which was essential for their involvement. Relatives' wants for involvement in the patients' disease and treatment trajectories depended on a significant and timely amount of information. CONCLUSIONS: The findings reveal that relatives are actively involved in the patients' disease and treatment trajectories. The relatives want and need support for their involvement, which is related directly to the accessibility and availability of health care professionals, as the demands placed on them change rapidly throughout the progression of the disease. One way to address relatives' wants and needs may be to further strengthen the relationship between the relatives and health care professionals. SUPPLEMENTAL DIGITAL CONTENT: A Danish-language version of the abstract of this review is available as Supplemental Digital Content [ http://links.lww.com/SRX/A26 ]. A German-language version of the abstract of this review is available at Supplemental Digital Content [ http://links.lww.com/SRX/A35 ].

Wants and needs for involvement experienced by relatives of patients with an acquired brain injury: a scoping review.

OBJECTIVE: The objective of this scoping review was to identify and map the breadth of available evidence on relatives' wants and needs for involvement in the care of patients with an acquired brain injury. INTRODUCTION: Acquired brain injuries often occur suddenly and unexpectedly. Experiencing an acquired brain injury has major consequences, not only for the patients-due to the devastating impact on their physical, cognitive, social, and psychological well-being-but also for the relatives who may need to take on a lifelong role as a carer. Research has cited some benefits of involving relatives in the care of patients, including positive effects on the patients' health outcomes; however, there are few studies showing how relatives can be involved. INCLUSION CRITERIA: Studies that defined or assessed relatives' wants and needs for involvement in the care of patients with an acquired brain injury in all settings were included. Studies were included if they described any kind of wants and needs for involvement experienced from the perspective of relatives. The review considered all study designs, except for literature reviews. METHODS: The JBI methodology for conducting a scoping review was employed in accordance with an a priori published protocol. An extensive search was conducted in MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in September 2021. This review was limited to studies published in English, German, or Scandinavian languages since January 2010. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. The review findings are reported as a descriptive summary, with tables and figures supporting the data. RESULTS: The search identified 3854 studies, 31 of which were included. The studies were published between 2010 and 2021, and were conducted across 9 countries. In total, 16 studies applied a qualitative study design, 4 studies used a descriptive approach, 4 studies used a quantitative research design, 4 studies reported using a mixed methods design, and 3 studies employed a multi-methods design. The studies were conducted across a variety of settings, ranging from acute care to home. The international literature on the involvement of relatives of patients with acquired brain injuries comprises multiple published studies on different aspects of the topic and within various care contexts. The findings identified few studies describing wants and needs experienced by relatives in relation to involvement in the patient's disease trajectory. CONCLUSIONS: The findings show that relatives' wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. The findings illustrate that the complexity of involvement is comprehensive, with multiple aspects to consider.

Interventions facilitating the involvement of relatives of patients with acquired brain injury or malignant brain tumour through the course of disease: a scoping review protocol.

INTRODUCTION: Research identifying the needs of relatives of patients with an acquired brain injury or malignant brain tumours is emerging, and the importance of relative involvement is widely acknowledged. However, the intention of involvement does not seem to be present in current practice and healthcare professionals' routines. The complexity of involvement of relatives is comprehensive, and there is a lack of overview of interventions facilitating and enhancing involvement of relatives. This scoping review aims to identify and map the available evidence on interventions facilitating involvement of relatives of patients with acquired brain injury or malignant brain tumour throughout the disease trajectory. METHODS AND ANALYSIS: The proposed scoping review will be performed following the Joanna Briggs Institute's methodology for scoping reviews. Published and unpublished literature in English, Scandinavian and German from January 2010 to August 2022 will be considered. The searches will be conducted using electronic bibliographic databases. This scoping review will consider studies describing interventions provided by multidisciplinary healthcare professionals. The key aspects of the interventions could, for example, be educational, informational, emotional, social or physical support aiming towards involvement of the relatives. This scoping review will consider all study designs, except for literature reviews of all types and designs. The data will be extracted using a data extraction tool developed to record specific data, including details of authors, year of publication, country, setting, study population, study design and key aspects of the intervention (mode, duration, intensity, provider) and type of primary and secondary outcomes applied to measure the interventions. The results will be presented in tabular form, accompanied by a descriptive summary related to the objective of the present scoping review. ETHICS AND DISSEMINATION: This scoping review is conducted as part of a larger postdoc project, which has been approved by the Danish Data Protection Agency (ID P-2020-547). The results will be disseminated through a peer-reviewed journal and presented at local, national and international conferences on brain injuries and brain cancer.

Feeling all alone in the world - experiences of patients with a neurological disease during a COVID-19 visitor ban: An interview study.

AIM: The aim of this study was to explore how patients with neurological disease experienced a COVID-19 visitor ban and to identify ways of improving the quality of care. BACKGROUND: In March 2020, a temporary visitor ban was introduced in Danish hospitals to reduce the spread of COVID-19. This led to changes in clinical practice, leaving patients without their loved ones beside them. Since neurological patients are already considered vulnerable due to physical, and sometimes cognitive impairment, we urgently wished to investigate these circumstances to facilitate appropriate support. DESIGN: This study was conducted using a qualitative explorative design. METHODS: Fourteen patients with neurological disease were interviewed using a semi-structured interview guide. Data were analysed through inductive thematic analysis. RESULTS: For most patients, being hospitalized during the COVID-19 visitor ban was a painful experience with the potential to negatively influence both their mental and physical health.

Facilitators and barriers of relatives' involvement in nursing care decisions and self-care of patients with acquired brain injury or malignant brain tumour: A scoping review protocol.

INTRODUCTION: Involving relatives can contribute to better quality of care and treatment, and lead to higher satisfaction with hospitalisation in the patients, relatives and healthcare professionals. Nurses play an important role in developing a trusting relationship and facilitating relatives' involvement, since they are around the patient and relatives all day. Thus, involvement is central to the nursing practice. However, involving relatives seems complex and multifaceted with many possible facilitators and barriers to nurses.' OBJECTIVE: The objective of this scoping review is to identify and map the available evidence concerning possible facilitators and barriers to nurses involving relatives in the course of treating disease in individuals who have sustained an acquired brain injury or malignant brain tumour in all settings. METHODS AND ANALYSIS: The proposed scoping review will be performed following the Joanna Briggs Institute's (JBI) methodology for scoping reviews. Indexed and grey literature in English, Scandinavian or German languages from 2010 to the present will be considered. The searches will be conducted using bibliographic databases: Medline (via PubMed), CINAHL (via EBSCO) and EMBASE (via OVID). Two reviewers will independently screen the studies and determine if their title, abstract and full text meet the study's inclusion criteria. In case of disagreement, a third and fourth reviewer will be consulted. A customised data extraction form will be used to extract data from the included studies. The results will be presented in tabular form, accompanied by a narrative summary related to the objective of the present scoping review. This scoping review will consider studies that involve nurses caring for individuals with an acquired brain injury or malignant brain tumour in all settings (community, primary care, health care centres, hospital and long-term care institutions). Studies will be included if they describe any kind of facilitators or barriers to involving relatives, and the review will consider all study designs.

Communicative and Supportive Strategies: A Qualitative Study Investigating Nursing Staff's Communicative Practice With Patients With Aphasia in Stroke Care.

This study aimed to provide detailed descriptions of the influences on the nursing staff's communicative practices with patients with aphasia in the context of usual stroke care interactions, and secondly to explore the nursing staff's use or non-use of supportive techniques, including the SCATM method. A qualitative design was chosen, combining field observations and semi-structured interviews. Inductive and deductive qualitative content analysis was used. The results showed that the nursing staff's interactions with patients with aphasia were influenced by organizational and environmental influences, nurses' roles and functions and supporting patients with aphasia in communication. The role of the nursing staff in caring for the psychosocial well-being of patients is deprioritised in favor of other tasks. If there is no time or culture for prioritizing time for conversing with patients and supporting their psychosocial well-being, communication-partner training like SCATM is likely hindered.

Signs and symptoms, apart from vital signs, that trigger nurses' concerns about deteriorating conditions in hospitalized paediatric patients: A scoping review.

AIM: This scoping review aimed to identify and map the signs and symptoms-apart from vital signs-that trigger nurses' concerns about the deteriorating conditions of hospitalized paediatric patients. DESIGN: A scoping review was conducted in accordance with the Joanna Briggs Institute methodology. METHODS: Six databases, including MEDLINE, CINAHL, Embase, Scopus, Swemed and ProQuest Dissertations and Theses databases, were searched systematically. Of 5795 citations, seven matched the inclusion criteria. RESULTS: Objective observations, such as the patient's colour, pain-level changes, and behavioural observations, were identified as signs that would trigger nurses' concerns. Nurse's intuitive feelings or gut feelings when seeing a patient was also identified as an important factor for identifying a deteriorating paediatric patient. A "gut feeling" was described as both a reaction to patient signs and a feeling based on the nurse's intuition gained through experience. The signs or symptoms that would trigger this "gut feeling" were not identified.

Family involvement in the treatment of patients with an acquired brain injury or malignant brain tumor: a scoping review protocol.

OBJECTIVE: The objective of this review is to scope the evidence on the wants and needs of families with regards to their level of involvement in treatment for patients with an acquired brain injury or malignant brain tumor. INTRODUCTION: Severe acquired brain injury and malignant brain tumor are diseases occurring unexpectedly and suddenly. Sustaining a severe acquired brain injury or malignant brain tumor has major consequences for patients and their relatives because of its devastating impact on physical, cognitive, social, and psychological well-being. The neurocognitive deficits have been shown to put strain on families in particular. INCLUSION CRITERIA: This scoping review will consider studies involving relatives (≥18 years) of patients (≥18 years) with severe acquired brain injury or malignant brain tumor (WHO grade 3 and 4) from different settings (municipalities, primary care, health care centers, hospital, and long-term care institutions). Studies will be included if they describe any kind of involvement by relatives, and the review will consider all study designs, regardless of their rigor. METHODS: Indexed and gray literature in English, Scandinavian, or German from January 2010 to the present will be considered. The searches will be conducted using bibliographic databases. Studies will be independently screened according to the inclusion criteria by two reviewers based on title, abstract, and full text. In case of disagreement, a third and fourth reviewer will be consulted. A customized data extraction form will be used to extract data from the included studies. The results will be presented in tabular form, accompanied by a narrative summary related to the objective of the present scoping review.

Signs and symptoms that trigger nurses' concerns about deteriorating conditions in hospitalized pediatric patients: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to identify and map the signs and symptoms that trigger nurses' concerns about the deteriorating conditions of hospitalized pediatric patients. INTRODUCTION: Standardized observations and risk assessments of hospitalized pediatric patients are important in modern health systems. The Pediatric Early Warning Score (PEWS) is based on objective criteria, such as vital parameters, but does not include subjective criteria, such as nurses' worry. A Dutch study has shown that adding indicators for "worry" or "concern" to an early warning system based on vital signs improves the prediction of unplanned adult admissions to intensive care units. However, this has not been studied in a pediatric population. Clarifying the signs and symptoms that trigger nurses' concerns about pediatric patients' conditions could possibly help them take actions based on their intuitive feelings and obtain medical support for pediatric patients in the early stages of deterioration. INCLUSION CRITERIA: This review will consider studies that include nurses working in hospital settings who care for pediatric patients (up to 18 years of age). Specifically, this scoping review will explore the signs and symptoms that underlie nurses' concerns about a pediatric patient's condition when the patient's vital signs are not a cause of worry. METHODS: This scoping review will be conducted in accordance with the JBI methodology for scoping reviews. The review will search MEDLINE (via PubMed), CINAHL, Embase, Scopus and Swemed databases. The review will also search for unpublished PhD dissertations using the ProQuest Dissertations and Theses.

What makes experienced nurses stay in their position? A qualitative interview study.

AIM: To explore which factors are important in experienced nurses' intention to stay in the clinical setting and to learn which factors affect their job satisfaction. BACKGROUND: Nursing turnover is a challenge for health care quality outcomes, and retaining nursing expertise at the bedside is of great importance. Thus, we must understand why nurses choose to stay employed in their clinical settings. METHOD(S): Twenty-eight nurses participated in a qualitative interview study. The data were analysed using inductive content analysis. RESULTS: The analysis revealed seven themes: being an experienced nurse, the importance of the speciality, management, professional challenges, good colleagues, balancing family and work-life and change in organisations. CONCLUSION(S): Many factors affect experienced nurses' job satisfaction and their intention to stay in their jobs and the profession. The factors were not particularly linked to the nurses' specialties. Nursing managers play a vital role in influencing these factors. IMPLICATIONS FOR NURSING MANAGEMENT: This study contributes important knowledge useful for development of policies and strategies for nursing retention, hence contributing to the enhancement of nursing practice. Nursing managers need to consider their roles in retaining experienced nurses as this study underscores the importance of job satisfaction in the nurses' intention to stay.

Call for human contact and support: an interview study exploring patients' experiences with inpatient stroke rehabilitation and their perception of nurses' and nurse assistants' roles and functions.

PURPOSE: To describe patients' experiences with inpatient stroke rehabilitation and their perception of nurses' and nurse assistants' roles and functions during hospitalisation. MATERIALS AND METHODS: In a qualitative study, 10 interviews with stroke patients were conducted, transcribed, and analysed using qualitative content analysis. RESULTS: The patients' experiences with inpatient stroke rehabilitation and their perception of nurses' and nurse assistants' roles and functions during hospitalisation were found to be related to one overall theme derived from 10 categories. As a recurring motif in the patients' interviews, they experienced existential thoughts, and these thoughts unquestionably affected their experiences within the rehabilitation unit. These thoughts enhanced their need for human contact, thereby affecting their relationships with and perceptions of the nursing staff. CONCLUSION: The findings deepen our understanding of how patients experience inpatient rehabilitation. The patients struggled with existential thoughts and concerns about the future and therefore called for human contact and support from the nursing staff. They perceived the nursing staff as mostly polite and helpful, but were unclear about the nursing staff's function in rehabilitation which, in the patients' perspective, equals physical training. Implications for Rehabilitation Nursing staff need to pay attention to the patients' needs, existential thoughts and concerns during inpatient rehabilitation. Meaningful goals for the rehabilitation of stroke patients are crucial, and it is vital that the patients commit to the goals. Patients expected polite and helpful nurses, but did not see them as therapeutic and active stakeholders, thus it is important that nursing staff present themselves as part of the interdisciplinary rehabilitation. There is a need for training and education of nursing staff, both pre and post graduate.

Strengthening nursing role and functions in stroke rehabilitation 24/7: A mixed-methods study assessing the feasibility and acceptability of an educational intervention programme.

AIM: To assess the feasibility of a nursing educational intervention for inpatient stroke rehabilitation and its acceptability from the nursing staff's perspective. BACKGROUND: There is currently a lack of interventions that integrate the diversity of nurses' role and functions in stroke rehabilitation and explore their effect on patient outcomes. DESIGN: We used a convergent, parallel, mixed-method design with data interviews and questionnaires. METHODS: Data collection was undertaken between February - July 2016. Data from questionnaires (N = 31) were analysed using descriptive statistics. The interviews (N = 10) were analysed using deductive content analysis. RESULTS: There was a high level of satisfaction with the educational programme in terms of its acceptability and feasibility. The qualitative findings disclosed the nursing staff's experiences with the educational programme. Mixed-methods analysis showed confirmatory results that were convergent and expanded. Only minor adjustments are required before an effect study can be conducted.

Strengthening the role and functions of nursing staff in inpatient stroke rehabilitation: developing a complex intervention using the Behaviour Change Wheel.

PURPOSE: Over the past two decades, attempts have been made to describe the nurse's role and functions in the inpatient stroke rehabilitation; however, the nursing contribution is neither clear nor well-defined. Previous studies have highlighted the need for research aimed at developing interventions in the neuro-nursing area. The objective of this paper was to describe the development of a nursing intervention aimed at optimising the inpatient rehabilitation of stroke patients by strengthening the role and functions of nursing staff. METHOD: A systematic approach was used, consistent with the framework for developing and evaluating complex interventions by the UK's Medical Research Council (MRC). Based on qualitative methods and using the Behaviour Change Wheel's (BCW) stepwise approach, we sought behaviours related to nursing staffs' roles and functions. RESULTS: We conducted a behavioural analysis to explain why nursing staff were or were not engaged in these behaviours. The nursing staff's Capability, Opportunity and Motivation were analysed with regard to working systematically with a rehabilitative approach and working deliberately and systematically with the patient's goals. CONCLUSION: We developed the educational intervention Rehabilitation 24/7. Following the MRC and the BCW frameworks is resource-consuming, but offers a way of developing a practical, well-structured intervention that is theory- and evidence based.