Becoming whole again-Caring for the self in chronic illness-A narrative review of qualitative empirical studies.

AIM AND OBJECTIVES: To explore how chronic illness transforms the self when living with and managing chronic illness and what this means for their self and identity. We also discuss how people with chronic conditions could be supported by healthcare professionals to manage illness in daily life. BACKGROUND: Self-management recommendations from health care are commonly based on a biomedical understanding of the disease. People's experiences of how a condition affects them and adequate support are crucial for their outcomes in daily self-management. DESIGN: A narrative review. METHODS: A systematic search was undertaken during January 2021 across the databases MEDLINE, CINAHL, PsycINFO, Soc INDEX and Philosopher's Index. A quality appraisal of articles was performed. Our analysis was inspired by qualitative content analysis. The PRISMA Checklist 2020/EQUATOR guidelines was used to report the study. RESULTS: Twenty-eight peer-reviewed qualitative empirical articles focusing on self in a variety of chronic illnesses with relevance to nursing published from January 2010 to December 2020 were included. The main theme, Developing from an uncertain existence to meaning and wholeness, was built up by the five themes: Walking on an unstable ground; Being stalemated; Being involved with others for better or worse; Searching for meaning; and lastly, Modifying self and integrating a new way of living. CONCLUSIONS: The results illuminate experiences that seldom are prioritized but need to be addressed by health professionals. Such experiences are oriented more towards the existential self rather than medical issues, why it is important to go beyond the medical lens. RELEVANCE TO CLINICAL PRACTICE: This is important knowledge for nurses aiming to support people with chronic illnesses. Nurses supporting people in self-management need to be aware that by teaching and encouraging people to revise their daily habits, they also work on the boundaries of their self-concept. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Critical components of social prescribing programmes with a focus on older adults - a systematic review.

AIMS: The aim of this study was to identify and evaluate critical components within social prescribing programmes that can impact loneliness, health, or well-being among older adults. METHODS: A systematic review with a narrative synthesis was conducted by systematically searching five databases. A total of 1193 hits were identified, screened, and assessed. Twelve studies were included, with data being extracted and deductively analysed in an iterative manner and then tabulated together with outcomes in order to find common narratives. RESULTS: Three critical components were identified: Assessment before prescription, matching participants with relevant activities, and individualised support from link worker. These critical components seemed important for the success of social prescribing programmes since they had an impact on loneliness, health, and well-being. All together, these results highlight the importance of person-centeredness in the prescribing process. CONCLUSIONS: The three critical components identified may prove useful in further research, evaluation, or implementation of social prescribing programmes. Important aspects for further evaluation are discussed.

The Swedish Version of the eHealth Literacy Questionnaire: Translation, Cultural Adaptation, and Validation Study.

BACKGROUND: With the increasing digitalization in health care, an effective instrument is necessary to assess health care consumers' digital competencies-their "eHealth literacy." The 7-scale eHealth Literacy Questionnaire (eHLQ), based on the theoretically robust eHealth Literacy Framework, has shown strong psychometric properties in Denmark and Australia. OBJECTIVE: The aim of this study was to translate, culturally adapt, and evaluate the psychometric properties of the Swedish version of the eHLQ. METHODS: We followed the Translation Integrity Procedure guidelines to translate and culturally adapt the questionnaire to Swedish using forward and backward translations, review by an expert panel, and cognitive interviewing. The psychometric properties of the Swedish eHLQ were investigated by evaluating its internal consistency (Cronbach α) and a priori-defined factor structure (confirmatory factor analysis). RESULTS: A total of 236 primary health care patients and parents of hospitalized children were included in the validation analysis. The mean age was 48.5 years, and 129 (55%) were women. All 7 eHLQ scales showed good internal consistency, with the Cronbach α ranging from .82 to .92. Single-factor and 7-factor confirmatory factor analysis showed satisfactory model-fit values. With one exception, all items demonstrated satisfactory loadings on their respective factors. CONCLUSIONS: The Swedish eHLQ demonstrated strong psychometric properties. It has the potential as a useful tool for a variety of purposes, including population surveys, intervention evaluations, and eHealth service implementations.

Experiences of transition to adulthood and transfer to adult care in young adults with type 1 diabetes: A qualitative study.

AIM: To explore young adults' experiences of living with type 1 diabetes in the transition to adulthood, including experiences of the transfer from paediatric to adult care. DESIGN: A qualitative approach was used. METHOD: Ten young adults, six women and four men, aged 19-29 years, participated. Participants were recruited at their regular diabetes clinic from spring 2021 to spring 2022. Semi-structured interviews were transcribed and analysed using qualitative content analysis. FINDINGS: Dreaming of being nurtured towards self-reliance was the overarching theme. Personal experiences of the transition to adulthood, including the transfer from paediatric to adult care, were described in terms of struggling to find balance in daily life, dealing with feelings of being different, being gradually supported to achieve independence, and wishing to be approached as a unique person in healthcare. CONCLUSION: In healthcare, it is important to emphasize not only diabetes-related factors but also emotional and psychosocial aspects of life connected to the transition to adulthood, including the transfer to adult care. The young adults wished to be seen as unique persons in healthcare during their emerging adulthood and should therefore be supported to achieve self-reliance through personal preparations for new challenges and for the consequences of transitioning to adulthood. Specialist nurses can provide appropriate knowledge and leadership. IMPLICATIONS FOR THE PROFESSION: These findings can guide nurse specialists in support for emerging adults to achieve self-reliance and indicate the importance of person-centred care when experiencing transition and transfer. REPORTING METHOD: The study adhered to EQUATOR guidelines, and the COREQ checklist for qualitative studies was used as the reporting method.

District Nurses' Experiences of Practice in Caring for People with Mental Ill-Health in Swedish Primary Care.

Mental ill-health is one of the greatest public health challenges in Sweden, and it is estimated that every third person seeking primary care in the country suffers from mental ill-health. Without proper treatment at an early stage, mental ill-health may lead to long-term illness and have a significant impact on functional ability. As district nurses are specialists in public health nursing, they have been pointed out as having a key role in the prevention and management of mental ill-health. The aim was to explore district nurses' practice in caring for people with mental ill-health within primary health care. Individual semi-structured interviews were conducted with district nurses (n = 18) and the transcribed text was subjected to qualitative content analysis. The result was formulated as several subthemes, eventually developed into three themes: Practicing within an organisation where traditional attitudes are impediments, Perceiving mental healthcare as not being an obvious part of district nursing, Working as fellow human beings rather than "professionals". The findings indicate that district nurses feel uncertainty in their practice in this area. Working independently with mental ill-health was not always considered socially acceptable among district nurses. Despite these challenges they tried to remain involved without becoming emotionally overwhelmed. They also strived to meet the needs of these patients with 'small things', that could be effective and a part of recovery-oriented practice, even if they might be defined as unprofessional, and their efficacy negated.

Transitioning to the clinical research nurse role - A qualitative descriptive study.

BACKGROUND: Studies have reported on the important role of the clinical research nurse in clinical studies. Yet, there is no international consensus about the role's competencies and tasks. Furthermore, the literature offers a little description of the career pathway from a ward-based registered nurse to a clinical research nurse. More knowledge about this specific role could benefit the nursing profession as well as increase the quality of clinical research. AIM: The aim of the study was to explore Swedish registered nurses' experiences transitioning into the clinical research nurse role. DESIGN: The study had a qualitative design. Data were collected via semi-structured interviews. Inductive qualitative content analysis was employed. METHODS: Ten participants (i.e., clinical research nurses) were interviewed in the spring of 2017. A semi-structured interview guide was used to address the transition into the clinical research nurse role, experience working in a new role, experience of ethical dilemmas and experience of organizational and professional issues related to the role. The interviews were analysed inductively using qualitative content analysis. RESULTS: The registered nurses described experiencing reality shock when they became clinical research nurses; that is, it was a challenging and transforming experience. The main theme, a challenging transition, was developed from the four subthemes highlighting that it defied their previous nursing role. They experienced an unclear professional identity, extended professional mandate, increased professional status and growing ethical consciousness in their new role. CONCLUSION: The results highlight that registered nurses who became clinical research nurses had needs that were both distinct from and overlapped with those of their former professional role as registered nurses. To avoid reality shocks, the development of clear competence pathways for nurses to become clinical research nurses, including introduction, mentorship and continued support, is necessary. Making their professional title more homogeneous, nationally and internationally, would facilitate role identification and comparisons in research.

Wishing to be perceived as a capable and resourceful person-A qualitative study of melanoma patients' experiences of the contact and interaction with healthcare professionals.

AIMS AND OBJECTIVES: To explore patients' experiences of contact and interaction with healthcare professionals (HCPs) during the diagnostic process of melanoma. BACKGROUND: In Sweden, most patients with suspected skin lesions seek care at the primary level of services in the first instance. Previous research describes the diagnostic process as a complex journey with uncertainty. Nonetheless, the importance of contact and interaction between patient and HCPs during the diagnostic process is rarely explored. DESIGN: This study adopted a qualitative design in which semi-structured interviews were conducted and the COREQ-checklist for qualitative studies employed (EQUATOR guidelines). METHODS: A sample of 30 patients (15 women, 15 men) diagnosed with melanoma was included. Secondary analysis of interviews was carried out using qualitative content analysis. RESULTS: One theme emerged: Wishing to be perceived as a capable and resourceful person that consisted of three categories: (a) The need of being valued, (b) The need of being informed and (c) The need of taking actions. CONCLUSIONS: Our results suggest that patients wish to be valued as capable and resourceful persons as well as to be provided with honest and sufficient information about the diagnosis and subsequent procedures. By fulfilling these wishes, HCPs can involve patients in the diagnostic process and reduce patients' uncertainty. A need of supportive and accessible health care to manage the diagnostic process and to reduce patients' struggle for care was also identified. RELEVANCE TO THE CLINICAL PRACTICE: Patients are satisfied when health care is organised in a patient-/person-centred manner, that is, in accordance with patients' needs, avoiding gatekeeping, and when HCPs interact respectfully in encounters. Accessible HCPs during the diagnostic process of melanoma are required to inform, support and navigate patients within the healthcare system and through their diagnostic journey.

Swedish primary healthcare nurses' perceptions of using digital eHealth services in support of patient self-management.

BACKGROUND: Nurses have expressed doubts about the ongoing digitalisation of Swedish primary health care. Given the potential role of eHealth in primary health care, including supporting interactive self-management for people with chronic conditions, it is important to highlight nurses' experiences. This study is part of a larger project aimed at implementing person-centred interactive self-management support (iSMS) in primary health care. AIM: The aim of this study was to describe Swedish primary healthcare nurses' perceptions of using digital eHealth systems and services to support patient self-management. METHODS: Focus group interviews were conducted with primary healthcare nurses (n = 20). The interview transcriptions were analysed using qualitative content analysis. RESULTS: Three themes emerged from the content analysis: caregiving in the midst of digital chaos; a lack of overview and control in daily work; and mixed feelings towards digitalisation. Each theme was subdivided into three subthemes. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: The results of this study provide insight into a number of concerns that stand in the way of success when it comes to the implementation and use of digital technology. If nurses are to adapt to the new policies and practices that accompany the current digitalised development in Swedish primary health care, the concept of a nurse's traditional work role needs to be amended in terms of the scope of work tasks and established views of traditional nursing. The study also highlights the need for more research to enable eHealth systems/services to be designed to fulfil multiple requirements. The digitised systems should be a tool for achieving good quality self-management support as well as giving the primary healthcare nurses adequate resources to support patients' self-management while still maintaining the values associated with person-centred care.

Ebola virus disease: caring for patients in Sierra Leone - a qualitative study.

AIM: The aim of this study was to describe Norwegian healthcare staffs' experiences of participating in care of patients with Ebola virus disease in Sierra Leone. BACKGROUND: Ebola is one of the most feared viruses known. Ebola virus disease is highly contagious with high mortality. The few qualitative studies made on experiences among healthcare professionals have highlighted problems as lack of protective resources, insufficient personnel and risk of societal stigmatization. DESIGN: Descriptive study with qualitative approach. METHOD: Individual narrative and focus group interviews were obtained during 2015 with eight nurses and one physician who had worked in Ebola care in Sierra Leone. The interviews were analysed using qualitative content analysis. RESULT: The analysis resulted in the two themes: 'Experiencing security by learning to manage risks'; and 'Developing courage and growth by facing personal fears'. Subthemes were: 'Relying on safeguard actions', 'Managing risk of contagion', 'Developing strategies for care despite risks', 'Constantly reminded of death', 'Successively defeating fears' and last, 'Increasing motivation through meaningfulness'. The participants described the reliance on training, organized effort, strict guidelines and equipment. They were respectful of the risk of transmission, made risk assessments, took responsibility, handled risky situations and were reminded of suffering and death. CONCLUSION: Despite challenges, the hazardous work with Ebola virus disease patients was experienced as meaningful which was an important motivator. Safe care was central in working with Ebola patients, but the care relation was challenged.

Experiences of and Coping With Severe Aortic Stenosis Among Patients Waiting for Transcatheter Aortic Valve Implantation.

BACKGROUND: Aortic stenosis (AS) is the most common valve disease in Western countries. Transcatheter aortic valve implantation (TAVI) has made it possible to treat patients with higher surgical risks. These patients are informed about their poor prognosis with only months or a few years to live without treatment. Because of their severe symptoms, limitations, and suffering, patients awaiting TAVI need special attention. OBJECTIVE: The aim of this study is to describe patients' experiences of coping with severe AS and of waiting for TAVI. METHODS: Swedish participants (n = 24; 9 women, 15 men) with a mean (SD) age of 80 (7.4) years who had been offered TAVI all agreed to participate in a presurgical interview. The interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis. RESULTS: The participants' experiences of coping with AS and awaiting TAVI were described by the main theme "living on the edge, but trying to stay in control," which comprised 3 categories: "trying to cope with physical symptoms and anxiety," "trying to preserve self and self-esteem despite life-threatening illness," and "trying to process the decision to undergo TAVI." CONCLUSIONS: Patients with AS and awaiting TAVI must cope with increasing symptoms and limitations in their social lives but still wish to be seen as the people they always have been. These patients may need extra support from healthcare personnel to process their experiences, which could help them to attach personal meaning to clinical information about the condition and its treatment that they could include in their decision about whether to undergo TAVI. Listening to patients' stories could help nurses and physicians to ensure that disease and treatment are meaningfully understood by the patient.

Patients' Decision Making About Undergoing Transcatheter Aortic Valve Implantation for Severe Aortic Stenosis.

BACKGROUND: Aortic stenosis is the most common valve disease in Western countries, and its prevalence is increasing because of the aging population. Some patients, denied surgery because of high risk, can be offered transcatheter aortic valve implantation (TAVI). These patients are old and have comorbidities, and it is not always easy for them to make the decision about accepting TAVI. OBJECTIVE: The aim of this study was to describe the decision-making process about undergoing TAVI treatment among people with severe aortic stenosis who are denied surgery. METHODS: The Swedish participants (n = 24) with a mean age of 80 years who had been offered TAVI all agreed to participate in a presurgical interview. The interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis. RESULTS: Three patterns in the decision-making process about TAVI treatment-ambivalent, obedient, and reconciled-were identified. The ambivalent patient is unsure of the value of treatment and aware of the risks; the obedient patient is unsure of the value of one's own decision and wants to leave the decision to others; the reconciled patient has reached a point where there is no choice anymore and is always sure that the decision to undergo TAVI is right. CONCLUSIONS: People with aortic stenosis who are offered TAVI need to discuss the risks and benefits in order to participate in decision making about the treatment. They have different patterns in decision making and would benefit from healthcare professionals being observant of them to support them in this process in a manner consistent with their values.

A questioned authority meets well-informed pregnant women--a qualitative study examining how midwives perceive their role in dietary counselling.

BACKGROUND: During pregnancy and afterward, a healthy diet is beneficial for the expecting mother and her foetus. Midwives in antenatal care have an ideal position for promoting healthy diets. Dietary counselling is however complex and recommendations can be controversial. While pregnant women struggle with dietary recommendations, midwives struggle with a lack of authority. The aim of the study was therefore to describe how midwives perceive their role and their significance in dietary counselling of pregnant women. METHODS: An interview study was conducted that involved twenty-one (21) experienced midwives, who worked in the Swedish prenatal health care. A qualitative content analysis was conducted. RESULTS: Pregnant women were perceived to be well informed, but they needed guidance to interpret information on the Internet. They were described as rigorous and eager information seekers who needed guidance to interpret information as they were worried and emotional. The midwives saw themselves as a questioned authority who lacked support. This meant being informative and directive though not always updated or listened to. Their impact was uncertain and they could also lack sufficient competence to counsel in delicate issues. CONCLUSION: The midwives' directive role may obstruct the women's needs to manage the dietary recommendations and risk evaluation in a women-centred dialogue. Midwives need to acknowledge pregnant women as both well informed and skilled if they are going to develop woman-centred antenatal care. Ongoing training and self-reflection will be needed to make this change.

The Process of Care-seeking for Myocardial Infarction Among Patients With Diabetes.

BACKGROUND: People with diabetes have a higher risk for myocardial infarction (MI) than do people without diabetes. It is extremely important that patients with MI seek medical care as soon as possible after symptom onset because the shorter the time from symptom onset to treatment, the better the prognosis. OBJECTIVE: The aim of this study was to explore how people with diabetes experience the onset of MI and how they decide to seek care. METHODS: We interviewed 15 patients with diabetes, 7 men and 8 women, seeking care for MI. They were interviewed 1 to 5 days after their admission to hospital. Five of the participants had had a previous MI; 5 were being treated with insulin; 5, with a combination of insulin and oral antidiabetic agents; and 5, with oral agents only. Data were analyzed according to grounded theory. RESULTS: The core category that emerged, "becoming ready to act," incorporated the related categories of perceiving symptoms, becoming aware of illness, feeling endangered, and acting on illness experience. Our results suggest that responses in each of the categories affect the care-seeking process and could be barriers or facilitators in timely care-seeking. Many participants did not see themselves as susceptible to MI and MI was not expressed as a complication of diabetes. CONCLUSIONS: Patients with diabetes engaged in a complex care-seeking process, including several delaying barriers, when they experienced symptoms of an MI. Education for patients with diabetes should include discussions about their increased risk of MI, the range of individual variation in symptoms and onset of MI, and the best course of action when possible symptoms of MI occur.

Diabetes empowerment and needs for self-management support among people with type 2 diabetes in a rural inland community in northern Sweden.

BACKGROUND: Self-management among people with T2D includes being responsible for attaining a blood sugar level within the normal range, eating healthy food, exercising and following prescriptions for medication, something that may need support. In rural areas, access to health care may be limited, and support from family members becomes important. AIM: The aim of this study was to describe perceptions and associations of diabetes empowerment, self-management ability and needs of self-management support among people with T2D in a northern rural community of Sweden. METHOD: People with T2D (n = 159) living a rural municipality in northern Sweden answered the SWE-DES-23 questionnaire and additional questions concerning self-management and needs for self-management support. RESULTS: A higher diabetes empowerment was associated with longer diabetes duration and support from healthcare professionals and relatives. Women rated a need for self-management support significantly higher than men did. Nonretired persons rated a significantly higher need for self-management support and a lower perception of support from healthcare professionals compared to retired persons. Cohabitant persons had a significantly higher perception of support from relatives and also estimated a higher need for relatives' involvement in clinical visits compared to persons living alone. Both the newly diagnosed and also those people with a diabetes duration of 10-15 years rated a higher need for group support. Higher self-awareness and readiness to change were apparent among people with short and long diabetes duration. Furthermore, self-management ability, support from healthcare professionals and from relatives and lastly diabetes duration was associated with diabetes empowerment. CONCLUSION: Not only people newly diagnosed with T2D should be offered patient-centred group support, strengthening patient empowerment. For future, family-focused care and education and training in person-centred care among diabetes specialist nurses is recommended.

Validity and reliability testing of the Swedish version of Melbourne Decision Making Questionnaire.

BACKGROUND: The Melbourne Decision-Making Questionnaire (MDMQ) is an attempt to capture and measure coping strategies that people use. The instrument had not previously been translated into Swedish. The aim of this study was to evaluate validity and reliability of the Swedish version of the MDMQ. METHOD: A Swedish translation was performed and back-translated. A group of five pilot readers evaluated content validity. The translated questionnaire was tested among 735 patients, healthcare workers, healthcare students and teachers. A parallel analysis (PA), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed. RESULT: An initial EFA with a four-factor solution showed a low concordance with the original 22-item four-factor model with a very low Cronbach's alpha in one of the dimensions. However, a second EFA with a three-factor solution showed a good model fit for the Swedish translation of the Melbourne Decision-Making Questionnaire (MDMQ-S) with a satisfactory Cronbach's alpha. A CFA showed a goodness of fit after deleting six items. CONCLUSION: After testing the MDMQ-S, we found support for validity and reliability of the instrument. We found the 16-item version of MDMQ-S to be satisfactory concerning the subscales vigilance, procrastination and buck-passing. However, we found no support that the hypervigilance dimension could be measured by the MDMQ-S.

Strategies in health-promoting dialogues--primary healthcare nurses' perspectives--a qualitative study.

AIM AND OBJECTIVES: The aim of this study was to describe dialogic strategies about health and lifestyle used by primary healthcare nurses (PHNs) in the Västerbotten Intervention Programme (VIP) in Sweden. BACKGROUND: The VIP offers all citizens aged 40, 50 and 60 in Västerbotten County an individual health check-up followed by a health-promoting dialogue with a specialist PHN. Inconsistencies in previous reports of the effects of lifestyle counselling and health promotion suggest that it is important to study dialogues about health and lifestyle to understand health-promoting strategies and to highlight aspects important to improving their effects. METHOD: In 2010, we conducted in-depth interviews with ten experienced PHNs working with the VIP at eight healthcare centres in Västerbotten County, Sweden. Qualitative content analysis was used to illuminate the nurses' strategies in health-promoting dialogues. The Regional Ethics Board (Dno 06-126M) approved the study. RESULTS: The PHNs used various strategies in dialogues about health and lifestyle that fell under the five themes 'Guiding patients vs. pressuring them; Adjusting to patients vs. directing the conversation; Inspiring confidence vs. instilling fear; Motivating and supporting patients vs. demanding responsibility; and lastly, Introducing emotionally charged subjects or avoiding them'. CONCLUSIONS: The results of this study may add knowledge about the difficulties and opportunities in health counselling. In the discussion, we suggest professional reflection as a means to increase knowledge and awareness about the self and context in the process of health counselling.

Patient-centred care in type 2 diabetes - an altered professional role for diabetes specialist nurses.

Little research has been done to try to understand how patient-centred care is understood and practised by healthcare professionals specialising in patients with diabetes. Experiences from patient-centred practices need to be highlighted as a way of motivating diabetes specialist nurses to take a patient-centred approach. The aim of this study was to describe diabetes specialist nurses' experiences of practising patient-centred care in the context of a type 2 diabetes intervention. The study design was descriptive and used qualitative methods. Focus group interviews complemented by individual semi-structured interviews were analysed by qualitative content analysis. The main theme of the diabetes specialist nurses' experiences of practising patient-centred care was an altered professional role. The main theme was based on two themes: ambivalence towards practising patient-centred care and enriched relationships with the patients. The ambivalence towards practising patient-centred care was based on the three subthemes: a position of withdrawn expertise, inconvenience of changing routines and insights that patient-centred care is difficult but possible. Their experiences of enriched relationships with patients were based on the two subthemes: courage to discuss the severity of diabetes and increased engagement in patients' daily lives. The diabetes specialist nurses' experiences with practising patient-centred care included doubts about their ability to practise in such a way and about the feasibility of such care. At the same time, their enriched relationships with patients were seen as an opportunity to engage in patients' lives. Training and support for practising patient-centred care may improve diabetes specialist nurses skills in patient-centred care and self-management support in type 2 diabetes.

Clinical research nurses perceive their role as being like the hub of a wheel without real power: Empirical qualitative research.

AIM: This study aimed to explore the experiences of being a clinical research nurse (CRN), in Sweden. DESIGN: A qualitative study analysing individual interview data. METHODS: Interviews with 10 participants were conducted in April 2017 and repeated with five participants in May 2022. A semi-structured interview guide was used to cover topics such as experiences of working in a new role and professional challenges related to the role. The transcribed interviews were analysed inductively using qualitative content analysis. RESULTS: The main theme revealed that the CRNs experienced their work role as being like a hub in a wheel, using an ethical compass, but without real power. The six themes identified showed that CRNs worked independently and relied on clinical experiences as nurses but needed more education. They not only had a sense of duty but also too large responsibilities. Furthermore, they viewed their work as valuable and important. However, they needed an accentuated ethical compass and were also affected by power relations that negatively impacted work. CONCLUSION: Working as a CRN means being in a central position and working independently, which requires diverse skills and competencies. CRNs, however, face and manage complex ethical and practical challenges without real power. They experience huge responsibilities but need education and acknowledgement, indicating a need for improvement. This is an important message to stakeholders and managers about the necessity of taking adequate action to support CRNs who are crucial resources in clinical research. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

More positive patient-reported outcomes in patients newly diagnosed with atrial fibrillation: a comparative longitudinal study.

AIMS: To compare patient-reported outcomes (PROs) in patients newly (<6 months) diagnosed with atrial fibrillation (AF) with those who have had a longer diagnosis (≥6 months) and to investigate whether or not these outcomes change over a 6-month period. METHODS AND RESULTS: In this longitudinal survey study, 129 patients with AF completed the Revised Illness Perception Questionnaire, the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia, and the Hospital Anxiety and Depression Scale at baseline and after 6 months. At baseline, patients newly diagnosed with AF (n = 53), compared with patients with a previous diagnosis (n = 76), reported AF as more temporary (P = 0.003) and had a higher belief in personal and treatment control (P = 0.004 and P = 0.041, respectively). At a 6-month follow-up, patients newly diagnosed reported a lower symptom burden (P = 0.004), better health-related quality of life (HRQoL); (P = 0.015), and a higher personal control (P < 0.001) than patients previously diagnosed. Over time, in patients newly diagnosed, symptom burden and the anxiety symptom score decreased (P = 0.001 and P = 0.014, respectively) and HRQoL improved (P = 0.002). CONCLUSION: Patients newly diagnosed with AF reported more positive PROs both at baseline and at a 6-month follow-up than patients with a previous diagnosis of AF. Therefore, it is important to quickly capture patients newly diagnosed to support their belief in their own abilities. Such support may, alongside medical treatments, help patients manage the disease, which may lead to reduced symptom burden and better HRQoL over time.

Experiences of living with symptomatic atrial fibrillation.

AIM: To explore the experiences of living with symptomatic atrial fibrillation. DESIGN: This study, with a descriptive qualitative design, was performed using semi-structured individual interviews. METHOD: Six women and nine men with symptomatic atrial fibrillation were included. The transcribed interviews were analysed using qualitative content analysis. The COREQ checklist was followed. RESULTS: The analysis resulted in a main theme, namely balancing life and included the themes striving for illness control, becoming a receiver or an active partner in care and dealing with changed self-image. The participants strived to understand their illness, prevent attacks and manage anxiety. Some of the participants were not involved in decision-making, were uninformed about self-care measures, reported a lack of continuity in care and felt that the doctors focused on information about the medical part of care.