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.

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.

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.

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.

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 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.

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.

Clarifying the role of clinical research nurses working in Sweden, using the Clinical Trial Nursing Questionnaire - Swedish version.

AIM: To explore the role of CRNs in Sweden and differences in competences and tasks, using the Clinical Trial Nursing Questionnaire - Swedish version (CTNQ-SWE). DESIGN: A cross-sectional survey. METHODS: Participants were identified through strategic sampling. Data were analysed by descriptive and comparative statistics. RESULTS: The respondents were experienced nurses who felt proficient in their role, they felt more acceptance by the principal investigators than by nursing colleagues. A majority of CRNs are involved in all procedures specified in the CTNQ-SWE. The most often performed tasks, also rated as the most important by the CRNs, concerned informed consent and management of investigational products. The education was often informal: with a lack of job descriptions and professional development plans. Need of formal specialist education was expressed. CONCLUSIONS: Knowledge about the role description can be used by clinical research enterprise internationally and healthcare organizations aiming to support CRNs in their role.