Live music in the intensive care unit - a beautiful experience.

BACKGROUND: The growing number of lightly or non-sedated patients who are critically ill means that more patients experience the noisy and stressful environment. Live music may create positive and meaningful moments. PURPOSE: To explore non-sedated patients' experiences of patient-tailored live music interventions in the intensive care unit. DESIGN: A qualitative study using a phenomenological-hermeneutic approach. Data were collected at two intensive care units from September 2019 to February 2020 exploring 18 live music interventions performed by music students from The Royal Academy of Music, Aarhus, Denmark. METHODS: Observations of live music interventions followed by patient interviews. All data together were analysed using Ricoeur's theory of interpretation. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used. RESULTS: Five themes emerged: 1) A break from everyday life, 2) A room with beautiful sounds and emotions, 3) Too tired to participate, 4) Knowing the music makes it meaningful and 5) A calm and beautiful moment. CONCLUSION: Patient-tailored live music to awake patients is both feasible and acceptable and perceived as a break from every-day life in the ICU. IMPLICATIONS FOR PRACTICE: Supporting health and well-being by bringing a humanizing resource into the intensive care setting for patients and nurses to enjoy.

Cognitive impairment in critically ill patients and former critically ill patients: A concept analysis.

OBJECTIVES: This concept analysis aimed to clarify the meaning of the concept of cognitive impairment in critically ill patients throughout the trajectory of their rehabilitation during and after an intensive care unit admission. REVIEW METHODS USED: This study used concept analysis based on Rodgers' evolutionary method. DATA SOURCES: A systematic search was conducted in Cumulative Index to Nursing and Allied Health Literature, Public MEDLINE, and American Psychological Associations PsycINFO. The web was searched for grey literature. REVIEW METHODS: Overall search terms used were "patients with cognitive impairments" AND "intensive care unit". Literature published between 2008 and 2022 was included and screened by title and abstract using systematic review software. The descriptive analysis focussed on surrogate terms/related concepts, attributes, and contextual basis. RESULTS: Thirty studies were included, representing variability in study design and country of origin. The analysis uncovered descriptions of the general terminology and the temporal trajectory of the concept, spanning from the acute phase to a long-term perspective. Attributes of the concept were described as delirium and domains of cognition. Antecedents were juxtaposed to risk factors, which were multifactorial. Consequences of cognitive impairment related to patients' quality of life, such as a decline in their ability to function independently, return to work, and manage everyday life. Also, cognitive impairment was identified as a significant public health problem. CONCLUSION: Cognitive impairment is a complex concept with many surrogate and related terms. Furthermore, the concept is inextricably intertwined with the concepts of delirium and post-intensive care syndrome. Cognitive impairment may manifest as symptoms that can be challenging to identify and assess due to limitations in current screening tools and the absence of a consensus on timing. In relation to assessment and preventive strategies, the findings underline the need to distinguish between acute and long-term cognitive impairment. REGISTRATION: There is no study registration number.

Cognitive impairment in intensive care unit patients: A qualitative exploration through observations and interviews.

OBJECTIVES: Many patients experience cognitive impairments while being admitted to an intensive care unit due to critical illness affecting their well-being and rehabilitation. Little is known about how patients experience cognitive impairments. This study aimed to explore patients' and relatives' experiences of patients' cognitive impairments while in the intensive care unit. RESEARCH METHODOLOGY: A multi-centre qualitative study, inspired by Ricoeur's phenomenological-hermeneutic approach, was conducted at four intensive care units at two hospitals in Denmark. Data collection encompassed participant observation and semi-structured single or dyadic interviews with 20 patients and 15 relatives, conducted in the intensive care units. The Consolidated Criteria for Reporting Qualitative Research checklist was used. FINDINGS: Four themes emerged during the analysis: 'Having a hazy memory and a foggy brain', 'Frustrations due to difficulties in speaking', 'An altered sense of self' and 'A feeling of disconnect between body and mind'. In the intensive care unit, patients experienced multiple cognitive impairments across several cognitive domains, significantly affecting their overall well-being. CONCLUSIONS: The findings provided a nuanced exploration of how patients in the intensive care unit grapple with cognitive impairments, leaving them feeling exposed and vulnerable due to increased dependency and loss of dignity. Relatives' presence and help was a huge support during admission. IMPLICATIONS FOR CLINICAL PRACTICE: This study highlights patients' and relatives' experiences of patients' cognitive impairments in the intensive care units. There is a need for nurses and allied healthcare professionals to address and manage reduced cognition in intensive care unit patients. This is particularly important to underpin recovery and rehabilitation processes, improve quality of life and optimise patients' return to everyday life. Future research must investigate how and when intensive care patients would benefit from preventive initiatives and initiatives to support recovery and rehabilitation of cognitive impairments.

Mobilisation during mechanical ventilation: A qualitative study exploring the practice of conscious patients, nurses and physiotherapists in intensive care unit.

AIM: To explore the practice of mobilisation of conscious and mechanically ventilated patients and the interaction between patients, nurses and physiotherapists. BACKGROUND: Long-term consequences of critical illness can be reduced by mobilisation starting in Intensive Care Units, but implementation in clinical practice is presently sparse. DESIGN: A qualitative study with a phenomenological-hermeneutic approach. METHODS: Participant observations in three Intensive Care Units involved twelve conscious mechanically ventilated patients, thirty-one nurses and four physiotherapists. Additionally seven semi-structured patient interviews, respectively at the ward and after discharge and two focus group interviews with healthcare professionals were conducted. The data analysis was inspired by Ricoeur's interpretation theory. The study adhered to the COREQ checklist. FINDINGS: Healthcare professionals performed a balance of support and guidance to promote mobilisation practice. The complexity of ICU mobilisation required a flexible mobility plan. Furthermore, interaction with feedback and humour was found to be 'a leverage' for patient's motivation to partake in mobilisation. The practice of mobilisation found patients striving to cope and healthcare professionals promoting a 'balanced standing by' and negotiating the flexible mobility plan to support mobilisation. CONCLUSION: The study revealed a need to clarify interprofessional communication to align expectations towards mobilisation of conscious and mechanically ventilated patients. RELEVANCE TO CLINICAL PRACTICE: The study demonstrated the important role of healthcare professionals to perform a stepwise and 'balanced standing by' in adequately supporting and challenging the mobilisation of mechanically ventilated patients. Furthermore, a synergy can arise when nurses and physiotherapists use supplementary feedback and humour, and cooperate based on a flexible situation-specific mobility plan in intensive care.

Understanding patients' perspectives when unprepared for the emergence of a parastomal bulge-a qualitative study.

AIM: The aim was to investigate patients' experiences of being prepared for the development of a parastomal bulge in relation to a stoma. METHODS: The paper draws on a qualitative interview study conducted with 20 Danish patients participating in five focus groups. Analysis was performed using a phenomenological-hermeneutic approach. RESULTS: We identified three themes. The first theme is 'The unforeseen bulge gives rise to increasing concern and a search for an explanation'. Patients searched for explanations in their own life and suspected that their behaviour or previous illness induced the bulge. The second theme is 'Missing or confusing information leads to counterproductive behaviour'. Patients lacked information on the prevention and treatment of parastomal bulging which led to disappointment with healthcare professionals. The third theme is 'Weighing the pros and cons of life with the bulge against the gamble of surgical repair'. Some patients came to terms with their situation, but for others a deadlocked situation arose when surgical repair was not an option. CONCLUSION: Healthcare communication directly impacts on patients' experiences and outcomes. When unprepared for the emergence of a parastomal bulge, patients' emotional and psychological well-being are affected and likewise patients' possibility of using their own health beliefs as a preventive strategy. To preserve patient autonomy, satisfaction and well-being, surgeons and stoma nurses should provide patients with tailored information bearing in mind the current lack of clear evidence on the prevention and treatment of parastomal bulging.

Nurses' experiences of managing cognitive problems in intensive care unit patients: A qualitative study.

OBJECTIVES: Nurses hold a key position in identifying symptoms and initiating preventive strategies for cognitive impairment in delirious and non-delirious intensive care unit patients. However, it remains unclear whether nurses consider cognitive impairment as a distinct concern from delirium. By understanding nurses' perspectives, we may identify barriers and facilitators in caring for patients with cognitive challenges in the intensive care unit. The objective of this study was to explore nurses' experiences of cognitive problems in patients admitted to an intensive care unit. RESEARCH METHODOLOGY: A phenomenological-hermeneutic study of interviews with ten nurses from intensive care units. Data were collected in March-April 2022 and analysed using a Ricœur-inspired method of interpretation. FINDINGS: Three themes related to nurses' experiences of cognitive problems emerged through analysis; 1) Cognitive problems and delirium are seen as two sides of the same coin, 2) Searching for the person behind the patient, and 3) Maintaining a sense of normality in a confusing environment. CONCLUSIONS: The interconnected concept of cognitive impairment and delirium syndrome meant that nurses assessed and managed cognitive problems in intensive care unit patients by focusing on preventing delirium. Apart from delirium screening, nurses relied on relatives' knowledge to assess patients' cognition. Most significantly, our study revealed a previously unexplored approach by nurses to manage patients' cognition, which involved "shielding" patients from the noisy and disruptive intensive care unit environment. IMPLICATIONS FOR CLINICAL PRACTICE: Effective communication methods, coupled with family involvement may aid nurses in identifying patients' cognitive problems. In the acute phase of critical illness, distinguishing between delirium and cognitive problems may not be clinically relevant, as delirium protocols may protect patients' cognition. Further investigating the concept of shielding may reveal previously unexplored nursing approaches to manage cognitive problems.

Getting the body back on track - Understanding the phenomenon of mobilisation when conscious and mechanically ventilated patients are mobilised in the intensive care unit.

OBJECTIVE: To gain an in-depth understanding of the phenomenon of mobilisation when conscious and mechanically ventilated patients are mobilised in the intensive care unit. DESIGN: A qualitative study with a phenomenological-hermeneutic approach. Data were generated in three intensive care units from September 2019 to March 2020. Participant observations of twelve conscious mechanically ventilated patients, thirty-five nurses and four physiotherapists were performed. Furthermore, seven semi-structured patient interviews were conducted, both on the ward and after discharge. FINDINGS: Mobilisation during mechanical ventilation in the intensive care unit followed a trajectory from a failing body to a growing sense of independence in getting the body back on track. Three themes were revealed: 'Challenging to move a failing body', 'Ambiguity of both resistance and willingness in the process of strengthen the body', and 'An ongoing effort in getting the body back on track'. CONCLUSIONS: Mobilisation when conscious and mechanically ventilated included support of the living body by physical prompts and ongoing bodily guidance. Resistance and willingness regarding mobilisation were found to be a way of coping with bodily reactions of comfort or discomfort, embedded in a need to feel bodily control. The trajectory of mobilisation promoted a sense of agency, as mobilisation activities at different stages during the intensive care unit stay supported the patients in becoming more active collaborators in getting the body back on track. IMPLICATIONS FOR CLINICAL PRACTICE: Ongoing bodily guidance provided by healthcare professionals can promote bodily control and support conscious and mechanically ventilated patients in active participation in mobilisation. Furthermore, understanding the ambiguity of patients' reactions caused by loss of bodily control provides a potential to prepare mechanically ventilated patients for and assist them with mobilisation. In particular, the first mobilisation in the intensive care unit seems to influence the success of future mobilisation, as the body remembers negative experiences.

Parents' lived experience of living with and caring for their burn-injured child in a home setting.

PURPOSE: When a burn injured child is discharged from hospital to its home, the responsibility for the after-care treatment is transferred to the parent(s). A knowledge gap exists concerning how parents experience caring for a burn-injured child at home after discharge. The aim is to gain an in-depth understanding of parents' lived experience of living with and caring for their burn-injured child in a home setting. METHODS: Twenty-four parents of burn-injured children treated at a Norwegian burn centre were interviewed 74 to 195 days after the burn accident (June 2017 to November 2018). A phenomenological hermeneutic approach was chosen, using a Ricoeur-inspired textual in-depth analysis method. NVivo 12 Plus and COREQ were used. RESULTS: Four themes emerged. The parents' experienced feelings had been embodied and would stay forever. They felt left alone to continue the medical treatment at home without having the necessary skills. The parents grieved over the lost past and feared the unknown future. They longed to meet or be contacted by staff members who knew them and their life situation. CONCLUSIONS: Healthcare professionals should see returning home as part of the course of illness and that right support during the hospital can prevent challenges after discharge.

Nursing interventions for pediatric patients with cancer and their families: a scoping review protocol.

OBJECTIVE: This scoping review will identify and map available nursing interventions provided by pediatric oncology hospital services to pediatric patients with cancer and/or their family members. The aim is to develop a comprehensive overview of the characteristics of nursing interventions and to identify potential knowledge gaps. INTRODUCTION: Clinical nursing care is an essential part of pediatric oncology. In pediatric oncology nursing research, a shift from explanatory studies to intervention studies is recommended. The body of research on interventions for pediatric oncology patients and their families has grown in recent years. However, there are no reviews on nursing interventions currently available for pediatric oncology. INCLUSION CRITERIA: Studies will be considered for inclusion if they refer to pediatric patients with cancer, and/or family members of a pediatric patient with cancer, who have received non-pharmacological and non-procedural nursing interventions provided by a pediatric oncology hospital service. Studies must also be peer-reviewed, published from the year 2000 onward, and written in English, Danish, Norwegian, or Swedish. METHODS: The review will be conducted in accordance with the JBI guidelines for scoping reviews. A 3-step search strategy will be followed using the PCC mnemonic (Population, Concept, Context). The databases to be searched will include Scopus, PubMed, CINAHL, PsyclNFO, and Embase. The identified studies will be screened based on title and abstract, as well as full text, by 2 independent reviewers. Data will be extracted and managed in Covidence. A summary of the results will be presented as a narrative description, supported by tables.

The experiences of patients with amyotrophic lateral sclerosis of their decision-making processes to invasive home mechanical ventilation-A qualitative study.

AIM: To explore and gain knowledge of the experiences and needs among patients with amyotrophic lateral sclerosis (ALS) of their decision-making processes whether to choose invasive home mechanical ventilation or not. DESIGN: A qualitative study. METHODS: A phenomenological-hermeneutic approach influenced by Ricoeur's interpretation theory was used. Seven patients with ALS were interviewed. The Consolidated Criteria for Reporting Qualitative Research checklist was used for reporting. RESULTS: Three themes were evident in patients' accounts of the decision-making process: (1) being taken care of directly after receiving the diagnosis, (2) living in uncertainty about what the future would bring and (3) doubt causing patients with ALS to change their minds. Patients with ALS were burdened with everyday life challenging decision-making processes about future treatment and doubt caused patients to change their minds about their future treatment. It is necessary to support patients in their decision-making processes using shared decision-making. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

Daily variation in physical activity during mechanical ventilation and stay in the intensive care unit.

BACKGROUND: Early mobilisation of mechanically ventilated patients during their stay at an intensive care unit (ICU) can improve physical recovery. Yet, an objective and specified description of physical activities while in the ICU is lacking. Therefore, our aim was to describe the objectively assessed type, quantity, and daily variation of physical activity among mechanically ventilated patients while in the ICU. METHOD: In an observational study in two mixed medical/surgical ICUs, we measured body posture in 39 patients on mechanical ventilation using a thigh- and chest-worn accelerometer while in the ICU. The accelerometer describes time spent lying, sitting, moving, in-bed cycling, standing and walking. Descriptive analysis of physical activity and daily variation was done using STATA. RESULTS: We found that mechanically ventilated patients spend 20/24 h lying in bed, 3 h sitting and only 1 h standing, moving, walking or bicycling while in the ICU. Intervals of non-lying time appeared from 9.00 to 12.00 and again from 18.00 to 21.30, with peaks at the hours of 9.00 and 18.00. CONCLUSION: ICU patients on mechanical ventilation were primarily sedentary. Physical activity of mechanically ventilated patients seems to be related to nurse- and/or physiotherapy-initiated activities. There is a need to create an awareness of improving clinical routines, towards active mobilisation throughout the day, for this vulnerable patient population during their stay in the ICU.

Communication with mechanically ventilated patients in intensive care units: A concept analysis.

AIMS: The aim of this study was to perform a concept analysis of communication with mechanically ventilated patients in intensive care units and present a preliminary model for communication practice with these patients. DESIGN: The Im & Meleis approach for concept analysis guided the study. SEARCH METHODS: A literature search was performed in January 2022 in MEDLINE, Embase, CINAHL, psycINFO and Scopus, limited to 1998-2022. The main medical subject headings search terms used were artificial respiration, communication and critical care. The search resulted in 10,698 unique references. REVIEW METHODS: After a blinded review by two authors, 108 references were included. Core concepts and terminology related to communication with mechanically ventilated patients were defined by content analytic methods. The concepts were then grouped into main categories after proposing relationships between them. As a final step, a preliminary model for communication with mechanically ventilated patients was developed. RESULTS: We identified 39 different phrases to describe the mechanically ventilated patient. A total of 60 relevant concepts describing the communication with mechanically ventilated patients in intensive care were identified. The concepts were categorized into five main categories in a conceptual map. The preliminary model encompasses the unique communication practice when interacting with mechanically ventilated patients in intensive care units. CONCLUSION: Highlighting different perspectives of the communication between mechanically ventilated patients and providers through concept analysis has contributed to a deeper understanding of the phenomena and the complexity of communication when the patients have limited possibilities to express themselves. IMPACT: A clear definition of concepts is needed in the further development of guidelines and recommendations for patient care in intensive care, as well as in future research. The preliminary model will be tested further. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution, as this is a concept analysis of previous research.

Patients' experiences of cognitive impairment following critical illness treated in an intensive care unit: A scoping review.

INTRODUCTION: Treatment with modern technology in an intensive care unit has increased critical illness survival. However, many patients are affected by their critical illness for months or years following discharge, as they experience cognitive impairments. Long-term cognitive impairments can severely affect patients' quality of life. Exploring patients' experiences on how and which cognitive impairments affect their everyday lives is important to improve planning of relevant research into interventions that may alleviate the burden of post-intensive cognitive impairments. AIM: To review the literature on patients' experiences of cognitive impairment following critical illness treated in an intensive care unit. METHODS: A systematic search was conducted in PubMed, Cinahl, PsycInfo and Embase in March-May 2021. References and citations in relevant studies were explored. The Covidence tool was used by two independent researchers to identify relevant studies for inclusion. The Mixed Methods Appraisal Tool was used for critical appraisal. The JBI methodology for scoping reviews and the PRISMA-ScR checklist were used (Supporting Information File 1). RESULTS: We identified 11 relevant qualitative and/or quantitative studies. Four themes were found: 'Experiencing poor memory', 'Managing everyday life', 'Unsupported by the healthcare system' and 'Strategies for support in recovery'. Patients used various strategies during their recovery and rehabilitation to regain independence and avoid being a burden. They needed information to support their recovery and rehabilitation; otherwise, they felt unsupported and betrayed by the healthcare system. CONCLUSION: Patients experienced various cognitive impairments following critical illness in the intensive care unit, affecting and challenging their quality of life and adaption to everyday life. RELEVANCE TO CLINICAL PRACTICE: Knowledge gained by exploring patients' experience of cognitive impairments following critical illness in the intensive care unit can contribute to improve clinical practice by targeting and optimising patients' rehabilitation process. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement in this scoping review.

Nurses' experiences of the phenomenon 'isolation communication'.

BACKGROUND: Communication with patients and relatives can be a challenge in the intensive care unit (ICU) setting because of the acute and critical situation. However, when caring for patients with infectious diseases like COVID-19, nurses' communication is challenged further due to the required use of personal protective equipment (PPE) and mandatory isolation regimes. AIM: To explore nurses' experiences of communicating while wearing PPE during COVID-19 isolation precautions in the ICU. STUDY DESIGN: A qualitative study within the phenomenological-hermeneutic tradition. Data were collected via 12 interviews with nurses working in a Danish ICU from September to November 2020. Data were analysed using a Ricoeur-inspired text interpretation method. FINDINGS: Three themes emerged during the analysis: (1) communication was limited and distanced and nurses had to compromise; (2) the nurses' senses were reduced, and verbal and nonverbal communication practises changed; and (3) patients' and relatives' communicative vulnerability were exposed in an extraordinary situation. CONCLUSION: The analysis revealed a phenomenon that can be described as 'isolation communication'. The isolation precautions and use of PPE had a profound impact on the nurses' caring and communicative practices, which were limited in this situation. The nurses found themselves physically, emotionally and socially distanced from the patients, relatives and their colleagues. However, to prevent the spread of the virus, isolation communication is something that the nurses have to endure. RELEVANCE TO CLINICAL PRACTICE: As our findings show that the nurses' communicative practises had to change during isolation communication, it is important for clinical practise and education to focus on implementing communication methods that optimise message transmission between ICU clinicians, patients and relatives in conditions requiring PPE and isolation. We should also focus on how to optimise interdisciplinary health communication in this situation.

Live music during haemodialysis: A multiple methods randomised controlled pilot study.

BACKGROUND: Fatigue is an immense problem among patients undergoing haemodialysis and is associated with anxiety and depression. Live music used in different hospital settings has shown promising effects, but the feasibility and potential effectiveness of live music during haemodialysis are unknown. OBJECTIVES: To evaluate the feasibility, the participants' musical experience and potential effectiveness of live music on patients' levels of fatigue, relaxation, anxiety, depression, treatment satisfaction and work engagement among nurses. DESIGN: A pilot randomised controlled trial evaluated with a multiple methods design. PARTICIPANTS: Two clusters of 12 patients were each randomised to receive either 30 min of live music once a week during haemodialysis or usual care over a period of 6 weeks. MEASUREMENTS: The primary outcome was patients' immediate fatigue. Other outcomes were patients' long-term and post-dialysis fatigue, relaxation, anxiety, depression, treatment satisfaction and work engagement among nurses. Observations and semi-structured interviews with patients, nurses and musicians were conducted to gain an in-depth understanding of the musical experience as well as feasibility. RESULTS: The study was feasible and detected significant differences on immediate fatigue (p < 0.001) and anxiety (p < 0.012) in the intervention group compared to controls. Among 17 nurses, a significant difference was found in Dedication (p < 0.024). Furthermore, live music gave patients an uplifting experience, bringing joy and relaxation and the nurses experienced a sense of quietness in a stressful day. CONCLUSIONS: Providing live music performed by professional musicians in a haemodialysis setting is feasible and showed a significant effect on immediate fatigue and anxiety compared to controls.

Musical Breaks-Live Music in a Hemodialysis Setting-A Qualitative Study on Patient, Nurse, and Musician Perspectives.

The aim of this hermeneutic-phenomenological study was to explore the perspectives of 12 patients, 17 nurses, and 4 musicians on patient-tailored live music interventions in a hemodialysis setting. Twenty-six semi-structured interviews were collected-17 with patients, 9 with nurses. Furthermore, 18 moderate participation observations, whilst 1 semi-structured group interview with 3 nurses and 3 musicians, and 13 reflective journals from musicians were collected. Within the analysis-based on Ricoeur's theory of interpretation-two overall themes emerged: (1) the inner space and (2) the participating space, followed by five subthemes: (1a) Entering a calm and enjoyable pause bubble; (1b) Resting in a thought-free state of mind; (1c) Traveling in the past and catching the moment through heartfelt music; (2a) Bringing positive changes into life; (2b) The artistic quality mediating a magnificent and beautiful experience. We found that patient-tailored live music was a meaningful break, influencing mental and physical well-being, time perception, community, work environment, and artistic approach. The artistic quality of the music was essential-together with the musicians' social awareness, empathy, and ability to interact with the patients-in creating meaningful moments for patients and staff. Overall, the music interventions were a welcome change in a predictable world of stressful routines and repetitive treatments.

Beyond objective measurements: Danish nurses' identification of hospitalized pediatric patients at risk of clinical deterioration - A qualitative study.

PURPOSE: While the use of Pediatric Track and Trigger Tools as a standard to discriminate high level of urgency in pediatric care has received considerable attention, less focus has been given to other important factors such as nurses' clinical observations and judgement. The purpose of this study was to explore nurses' observational practice and focus on which non-measurable signs and symptoms nurses find important when identifying inpatient pediatric patients at risk of clinical deterioration. DESIGN AND METHODS: This was an inductive qualitative study based on an interpretive description methodology. Data were obtained through participant observation of experienced nurses working in a Danish pediatric unit and focus group interviews with pediatric nurses. Field notes were taken, and focus group interviews were audio taped and transcribed. A thematic text condensation method was used to analyse data. RESULTS: Findings revealed the following four main themes of non-measurable signs and symptoms that nurses find important when identifying children at risk of clinical deterioration: Colour and skin tone; sounds; movement patterns; behavioural signs. CONCLUSIONS: This study suggest that pediatric patients show signs and symptoms that go beyond the objective measurements integrated in Pediatric Track and Trigger Tools and they should not be ignored as they are highly valuable to nurses who are responsible for observing inpatient pediatric patients at risk of clinical deterioration. IMPLICATIONS: More empirical research on nurses' observational practice is recommended, especially research to identify the signs and symptoms - both measurable and non-measurable - that are significant to nurses at the bedside.

Patients' experiences of cognitive impairment following critical illness: a scoping review protocol.

INTRODUCTION: Critical illness and admission to an intensive care unit (ICU) can affect patients for months or years following discharge as many suffer from cognitive impairment. Long-term cognitive impairment affects patients' quality of life and ability to adapt to everyday life. Exploring their experiences on how and which cognitive impairments are affecting their everyday lives facilitates planning of relevant research on interventions that may serve to alleviate the burden of post-ICU cognitive impairment. The objective of this scoping review is to map the existing research on patients' experiences of cognitive impairment following critical illness. METHODS AND ANALYSIS: The methodology will follow the Joanna Briggs Institute guidelines for scoping reviews. The databases MEDLINE, CINAHL, PsycINFO and Embase will be searched to identify studies appropriate for inclusion. Any peer-reviewed original studies meeting the inclusion criteria and include statements from adult patients about how they experience cognitive impairment following critical illness and ICU admission will be considered. Studies published in English and Scandinavian languages will be included, with no further geographical or cultural limitations. The included studies will be screened by two independent researchers using a standardised data extraction tool and the Mixed Methods Appraisal Tool will be used for critical appraisal. The results will be presented in a tabular form, and data will be supported by narrative descriptions or a narrative summary. ETHICS AND DISSEMINATION: Since the scoping review methodology aims at synthetising existing research on patients' experiences of cognitive impairment following critical illness, the scoping review does not require ethical approval. The results will be disseminated though a peer-reviewed publication in a scientific journal.

Ageing with neuromuscular disease: Implications for a lifeworld-led care through a humanising approach.

OBJECTIVES: To understand the care and support needs in ageing with neuromuscular disease from a patient-user perspective. BACKGROUND: The term neuromuscular disease covers several chronic hereditary or acquired disease subtypes. In the developed countries, advances in symptoms management, technical advancements and rehabilitation initiatives have resulted in increased life expectancy for some subtypes. Life with neuromuscular disease is thus likely to continue into adulthood and old age. However, knowledge of the care and support needs of patients ageing with neuromuscular disease remains sparse. DESIGN: Adopting a user-participatory approach embedded in a phenomenological hermeneutic tradition, we conducted two user-group discussions focusing on care and support needs in people ageing with neuromuscular disease. Twenty-five users with neuromuscular disease participated in the group discussions. Data were analysed using a three-stepped analysis method inspired by the French Philosopher Paul Ricoeur. In the analysis process, dialectical movements between a surface interpretation and an in-depth understanding occur. The COREQ checklist was used to report the study. RESULTS: Two themes were identified; 'Changes in the sheltering relationships of life require preparation' and 'Ageing introduces a dichotomy between circumstantial normalcy and minority groupness'. An understanding of care and support needs in life with neuromuscular disease was reached revealing a need for a lifeworld-led approach. CONCLUSION: Persons ageing with neuromuscular disease crave a fusion of disease- and age-led care and support. This fusion may be achieved through the introduction of a lifeworld-led approach to care and support. RELEVANCE FOR CLINICAL PRACTICE: Unmet care and support needs in people ageing with neuromuscular disease may result in patients experiencing fear and concern about their life situation. Healthcare professionals may play a crucial role in creating coherent lives for these persons if they understand the approach proposed herein to uncover the care and support needs in people ageing with neuromuscular disease.

Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences.

AIM: To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD). DESIGN: A qualitative study using a phenomenological-hermeneutic approach. METHODS: Data were gathered through interviews with 15 persons living with NMD in 2018. A three-levelled analysis and interpretation influenced by Paul Ricoeur's philosophy were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used from May 2018 to December 2018. RESULTS: Three themes were identified: "Endless adaptations change the fundamentals of everyday life ageing with NMD," "The 'swamp' of deterioration" is traversed through experiences of belonging and relationship," "Being disabled by a professional knowledge gap and stereotypical images." In these themes, the experience of participation in everyday life ageing with NMD appeared to depend on the ability to adapt constantly. Through participation, a sense of belonging and purpose was maintained. Lack of knowledge amongst professionals may negatively affect the ongoing participation of people ageing with NMD.