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1.
J Clin Nurs ; 2024 Jun 17.
Article in English | MEDLINE | ID: mdl-38886987

ABSTRACT

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.

2.
Nurs Open ; 11(5): e2183, 2024 May.
Article in English | MEDLINE | ID: mdl-38805659

ABSTRACT

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.


Subject(s)
Nurse's Role , Qualitative Research , Humans , Sweden , Female , Adult , Male , Nurse's Role/psychology , Interviews as Topic , Middle Aged , Empirical Research , Attitude of Health Personnel
3.
Article in English | MEDLINE | ID: mdl-38170563

ABSTRACT

AIMS: To compare patient-reported outcomes (PROs) in patients newly (< six months) diagnosed with atrial fibrillation (AF) with those who have had the diagnosis longer (≥ six months) and to investigate whether or not these outcomes change over a six month's 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 six months.At baseline, patients newly diagnosed with AF (n=53), compared to patients with a previous diagnosis (n=76), reported AF as more temporary (P = 0.003) and had higher belief in personal- and treatment control (P = 0.004, P = 0.041 respectively). At six months follow-up, patients newly diagnosed reported a lower symptom burden (P = 0.004), better health-related quality of life (HRQoL) (P = 0.015) and higher personal control (P < 0.001) than patients previously diagnosed. Over time, in patients newly diagnosed, symptom burden and anxiety symptom score decreased (P = 0.001, P = 0.014 respectively) and HRQoL improved (P = 0.002). CONCLUSIONS: Patients newly diagnosed with AF reported more positive PROs both at baseline and at six months 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 the patients manage the disease, which may lead to reduced symptom burden and better HRQoL over time.

4.
Scand J Prim Health Care ; 41(3): 326-342, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37485982

ABSTRACT

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.


Subject(s)
Health Status , Psychological Well-Being , Social Interaction , Aged , Humans , Loneliness
5.
J Adv Nurs ; 79(12): 4621-4634, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37357405

ABSTRACT

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.


Subject(s)
Diabetes Mellitus, Type 1 , Transition to Adult Care , Male , Humans , Female , Young Adult , Child , Diabetes Mellitus, Type 1/therapy , Diabetes Mellitus, Type 1/psychology , Delivery of Health Care , Qualitative Research , Emotions
6.
J Med Internet Res ; 25: e43267, 2023 04 12.
Article in English | MEDLINE | ID: mdl-37043268

ABSTRACT

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.


Subject(s)
Health Literacy , Telemedicine , Child , Humans , Female , Middle Aged , Male , Health Literacy/methods , Sweden , Reproducibility of Results , Telemedicine/methods , Surveys and Questionnaires , Psychometrics/methods
7.
Issues Ment Health Nurs ; 44(5): 396-405, 2023 May.
Article in English | MEDLINE | ID: mdl-37053044

ABSTRACT

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.


Subject(s)
Delivery of Health Care , Nurses , Humans , Sweden , Mental Health , Primary Health Care
8.
Nurs Open ; 10(3): 1821-1829, 2023 03.
Article in English | MEDLINE | ID: mdl-36309946

ABSTRACT

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.


Subject(s)
Atrial Fibrillation , Physicians , Male , Humans , Female , Atrial Fibrillation/therapy , Anxiety , Anxiety Disorders , Adaptation, Psychological
9.
J Adv Nurs ; 78(11): 3817-3829, 2022 Nov.
Article in English | MEDLINE | ID: mdl-35909097

ABSTRACT

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.


Subject(s)
Nurse's Role , Humans , Qualitative Research , Sweden
10.
Nurs Open ; 9(5): 2434-2443, 2022 09.
Article in English | MEDLINE | ID: mdl-35652538

ABSTRACT

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.


Subject(s)
Clinical Nursing Research , Nurse's Role , Clinical Trials as Topic , Cross-Sectional Studies , Humans , Surveys and Questionnaires , Sweden
11.
BMJ Open ; 12(4): e057836, 2022 04 01.
Article in English | MEDLINE | ID: mdl-35365536

ABSTRACT

INTRODUCTION: Continuous subcutaneous insulin infusion (CSII) treatment is beneficial for obtaining glycaemic control for many persons with type 1 diabetes mellitus (T1DM). Still, some individuals do not obtain improved HbA1C levels despite CSII treatment, and there is a lack of evidence regarding how psychosocial factors may influence glycaemic control. Thus, we aimed to explore the attitudes and experiences of self-management among people with T1DM and suboptimal glycaemic control despite CSII treatment. RESEARCH DESIGN AND METHODS: A qualitative inductive design was applied, and four FGDs were performed with 37 adult men and women of various ages and duration of T1DM. All participants had suboptimal glycaemic control despite CSII treatment. Transcripts were analysed using qualitative manifest and latent content analysis. RESULTS AND CONCLUSION: The themes Searching for freedom and flexibility and Preferring safety and the well-known illustrated the divergent psychosocial strategies adapted, which both resulted in suboptimal glycaemic control. The technical devices and their effects on glycaemic levels may be challenging to understand and adjust to fit people's lifestyles. The rapid advances of technology devices in diabetes care can potentially change peoples' lives, but is the educational support developing as fast? Multifaceted web-based education of high quality, including tailored support with a person-centred focus, is more important than ever before as the need for technical knowledge and understanding may put further disease burdens to patients with T1DM on CSII treatment.


Subject(s)
Diabetes Mellitus, Type 1 , Self-Management , Adult , Diabetes Mellitus, Type 1/therapy , Female , Freedom , Glycemic Control , Humans , Hypoglycemic Agents/therapeutic use , Insulin/therapeutic use , Insulin Infusion Systems , Male
12.
Nurs Open ; 9(6): 2657-2664, 2022 11.
Article in English | MEDLINE | ID: mdl-34132062

ABSTRACT

AIM: The aim of this study was to explore patients' experiences of preventive anticoagulation therapy in atrial fibrillation. DESIGN: This was a descriptive qualitative study based on interviews. METHODS: Individual interviews with 15 patients, 6 women and 9 men, treated with preventive oral anticoagulant due to atrial fibrillation, were conducted. The interviews were analysed with qualitative content analysis. RESULTS: Based on the analysis, the theme Managing a necessary evil emerged. The theme comprised the three categories: Coping with anxiety and changes in daily life, Having confidence in care and Being a partner or only a receiver of treatment. Patients described it like being faced with a situation where a treatment perceived as vital was weighed against undesirable consequences and risks. Patients trusted caregivers and had confidence in care, but there was a risk of being a receiver of care instead of becoming a partner.


Subject(s)
Atrial Fibrillation , Humans , Male , Female , Atrial Fibrillation/complications , Atrial Fibrillation/drug therapy , Atrial Fibrillation/chemically induced , Anticoagulants/therapeutic use , Anticoagulants/adverse effects , Blood Coagulation , Qualitative Research , Administration, Oral
13.
Article in English | MEDLINE | ID: mdl-34948852

ABSTRACT

During the COVID-19 pandemic, the Internet has been a major source of information for people to keep updated with news and guidelines. However, concerns have been raised about the 'infodemic', which includes the overabundance of online information and the spread of misleading information. Adequate eHealth literacy skills among world citizens have therefore been emphasized as vital during the pandemic. Persons with type 2 diabetes have been at increased risk of severe outcomes of COVID-19 disease. This study aimed to explore online COVID-19 information acquisition experiences among persons with type 2 diabetes and varying eHealth literacy. Fifty-eight participants filled out the eHealth Literacy Scale (eHEALS), along with a qualitative questionnaire with free-text questions. Additionally, 10 participants were interviewed. Thematic analysis was applied to identify patterns in participants' experiences. Two domains were identified: perceived challenges with online information about COVID-19, and coping strategies to manage challenges. The perceived challenges were: being exposed to information overload, dealing with conflicting information, and being strongly emotionally affected. The related coping strategies were: protecting oneself, trusting authorities, taking command, and using common sense. These strategies often involved triangulation of the information obtained, including participants consulting their common sense, various sources, or family and friends. This paper highlights the crucial role of authorities in delivering online information, that according to health literacy principles, is easy to access, understand, and use. Furthermore, our results reinforce the importance of diabetes nurses, as well as healthcare professionals in general, in encouraging patients to share their Internet findings, promote information from reliable sources, and deliver tailored information that suits individual needs. Because our results underline the importance of social support in eHealth literacy and the assessment of online health information, the inclusion of family and friends needs to be increasingly considered in diabetes care. Due to the small homogenous sample, the results of this study cannot be generalized. However, the reader can assess the transferability to other situations and settings based on our contextual descriptions.


Subject(s)
COVID-19 , Diabetes Mellitus, Type 2 , Health Literacy , Telemedicine , Diabetes Mellitus, Type 2/epidemiology , Humans , Infodemic , Internet , Pandemics , SARS-CoV-2 , Surveys and Questionnaires
14.
Int J Integr Care ; 21(2): 33, 2021 Jun 22.
Article in English | MEDLINE | ID: mdl-34220397

ABSTRACT

INTRODUCTION: Loneliness and social isolation among older adults (≥65) are an emerging issue of public concern, associated with increased morbidity and mortality. Today there is no systematic intervention developed, implemented or evaluated in Sweden addressing loneliness. The overall aim for this project is to develop, test and refine a person-centred Swedish model for social prescribing (SPiS), and to assess whether and how it reduces loneliness, promotes health and improves well-being among older adults. DESCRIPTION: The focus will be to develop, culturally adapt, evaluate and refine the SPiS model. Following the sequential structure of realist evaluation in three consecutive phases qualitative and quantitative data along with subsequent analysis methods will be collected and utilized. The project will provide knowledge of what works with the social prescribing model, for whom, in what conditions and why, in relation to loneliness, health and well-being among older adults. DISCUSSION: SPiS has the unique position of providing initial knowledge regarding how to reduce loneliness in the Swedish context. However, evaluation is complex as this research goes beyond the unidimensional question "Is it working?". CONCLUSION: Developing, implementing and evaluating such a complex program needs systematic and close evaluation.

15.
JMIR Nurs ; 3(1): e16318, 2020.
Article in English | MEDLINE | ID: mdl-34345780

ABSTRACT

BACKGROUND: Globally, most countries face a common challenge by moving toward a population-based structure with an increasing number of older people living with chronic conditions such as type 2 diabetes. This creates a considerable burden on health care services. The use of digital tools to tackle health care challenges established views on traditional nursing, based on face-to-face meetings. Self-management is considered a key component of chronic care and can be defined as management of the day-to-day impact of a condition, something that is often a lifelong task. The use of a screening instrument, such as the Self-Management Assessment Scale (SMASc), offers the potential to guide primary health care nurses into person-centered self-management support, which in turn can help people strengthen their empowerment and self-management capabilities. However, research on self-management screening instruments is sparse, and no research on nurses' experiences using a digitalized scale for measuring patients' needs for self-management support in primary health care settings has been found. OBJECTIVE: This paper describes diabetes specialist nurses' (DSNs) experiences of a pilot implementation of the SMASc instrument as the basis for person-centered digital self-management support. METHODS: This qualitative study is based on observations and interviews analyzed using qualitative content analysis. RESULTS: From the perspectives of DSNs, the SMASc instrument offers insights that contribute to strengthened self-management support for people with type 2 diabetes by providing a new way of thinking and acting on the patient's term. Furthermore, the SMASc was seen as a screening instrument with good potential that embraces more than medical issues; it contributed to strengthening person-centered self-management support, and the instrument was considered to lead both parts, that is, DSNs and patients, to develop together through collaboration. CONCLUSIONS: Person-centered care is advocated as a model for good clinical practice; however, this is not always complied with. Screening instruments, such as the SMASc, may empower both nurses and patients with type 2 diabetes with more personalized care. Using a screening instrument in a patient meeting may also contribute to a role change in the work and practice of DSNs.

16.
JMIR Diabetes ; 4(3): e10702, 2019 Sep 19.
Article in English | MEDLINE | ID: mdl-31538941

ABSTRACT

BACKGROUND: Self-management is a substantial part of treatment for patients with type 2 diabetes (T2D). Modern digital technology, being small, available, and ubiquitous, might work well in supporting self-management. This study follows the process of developing a pilot implementation of an electronic health (eHealth) service for T2D self-management support in primary health care. The use of digital health, or eHealth, solutions for supporting self-management for patients with T2D is increasing. There are good examples of successful implementations that can serve as guides in the development of new solutions. However, when adding person-centered principles as a requirement, the examples are scarce. OBJECTIVE: The objective of this study was to explore challenges that could impact the design of a person-centered eHealth service for T2D self-management support. The study included data collection from multiple sources, that is, interviews, observations, focus groups, and a Mentimeter (interactive presentation with polling) survey among stakeholders, representing various perspectives of T2D. METHODS: A user-centered design approach was used to exploratively collect data from different sources. Data were collected from a workshop, interviews, and observations. The different data sources enabled a triangulation of data. RESULTS: Results show that user needs related to an eHealth service for person-centered T2D self-management support are multifaceted and situated in a complex context. The two main user groups, patients and diabetes specialist nurses, express needs that both diverge and converge, which indicates that critical design decisions have to be made. There is also a discrepancy between the needs expressed by the potential users and the current work practice, suggesting more attention toward changing the organization of work to fully support a new eHealth service. CONCLUSIONS: A total of three overarching challenges-flexible access, reducing administrative tasks, and patient empowerment-each having a significant impact on design, are discussed. These challenges need to be considered and resolved through careful design decisions. Special attention has to be given to the patient user group that could greatly impact current work practice and power structures at the primary care unit. A need for further studies investigating patient needs in everyday life is identified to better support the implementation of technology that does not give specific attention to organizational perspectives but instead approach design with the patient perspective in focus.

17.
Eur J Cardiovasc Nurs ; 18(7): 593-600, 2019 Oct.
Article in English | MEDLINE | ID: mdl-31113221

ABSTRACT

BACKGROUND: Transcatheter aortic valve implantation may be indicated for patients with aortic stenosis and high risk of postoperative mortality. The assessment of suitability for transcatheter aortic valve implantation requires consensus agreement of a team of cardiologists and cardiac surgeons. The burden of comorbidities, frailty and cognitive impairment are factors included when risks for transcatheter aortic valve implantation are balanced against the expected benefits. Although transcatheter aortic valve implantation is a possibility for many, there are still ineligible patients. Knowledge of their experiences of being deemed ineligible are lacking. AIM: The aim of this study was to explore patients' experiences of being considered for transcatheter aortic valve implantation but judged ineligible. METHODS: Individual in-depth interviews were performed with eight persons, and qualitative content analysis was used for the analysis. RESULTS: Being ineligible for transcatheter aortic valve implantation may induce both hope and despair. Hope was linked to experiences of acceptance, relief of symptoms, support and control; despair was associated with feelings of being missed and abandoned, and of grief and insecurity. Some expressed great anxiety, since their incurable heart disease meant an imminent death. Others were more concerned over practical problems that affected everyday life. CONCLUSION: Being ineligible for transcatheter aortic valve implantation does not necessarily lead to despair. Hope is built through relationships, continuity and support. A combination of person-centred care and palliative care during the end-of-life phase should be offered to patients in order to help clients re-conceptualise hope during this stage of their illness. Cardiovascular nurses in the transcatheter aortic valve implantation team are suitable to facilitate continued care based on the patient's needs, desires and local conditions.


Subject(s)
Aortic Valve Stenosis/surgery , Eligibility Determination/standards , Hope , Patient Selection , Patients/psychology , Transcatheter Aortic Valve Replacement/psychology , Aged , Aged, 80 and over , Female , Humans , Male , Risk Factors , Severity of Illness Index
18.
JMIR Res Protoc ; 8(4): e10250, 2019 Apr 08.
Article in English | MEDLINE | ID: mdl-30958279

ABSTRACT

BACKGROUND: Type 2 diabetes (T2D) is increasing as the population ages. The development of new medical treatments is promising and important, but the basic treatment remains self-management, even if adherence to lifestyle advice is low. Electronic health (eHealth) or mHealth interventions can increase empowerment among people living with T2D and may compensate for the lack of professional resources and geographical distances. The interactive self-management support (iSMS) project aims at including digital tools to support people living with T2D in their self-management and facilitating their interaction with diabetes specialist nurses (DSNs). This protocol outlines a study with the purpose of developing and evaluating an intervention where people living with T2D can increase self-efficacy and empowerment through digital self-monitoring and interaction with DSNs. OBJECTIVE: To develop and evaluate a person-centered iSMS intervention in primary health care for people with T2D in addition to their usual diabetes care. METHODS: This study is a 12-month, 3-armed, nonblinded randomized controlled trial (RCT), which will be conducted in 6 primary health care centers (HCCs) in northern Sweden. Eligible participants will be randomized to either an intervention group (n=46), a control group (n=46), or an external group (n=46) for comparison. The intervention group will receive the mobile app, and the control group will receive a minimal intervention (diabetes brochure) and the usual standard of care. Changes in glycated hemoglobin (HbA1c) will be the primary outcome measure. RESULTS: This trial is currently open for recruitment. The first results are expected to be submitted for publication in Autumn 2019. CONCLUSIONS: This study, with its focus on iSMS, will provide insights regarding suitable ways to promote and develop a person-centered intervention. If successful, the intervention has the potential to become a model for the provision of self-management support to people with T2D. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/10250.

19.
Nurs Open ; 6(2): 504-513, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30918701

ABSTRACT

AIM: To develop and psychometrically test the Self-Management Assessment Scale (SMASc), a screening instrument for person-centred guidance and self-management support of persons with type 2 diabetes (T2D). BACKGROUND: T2D is a common and globally increasing chronic condition. Improved self-management is a vital and integral component of diabetes care to prevent complications from poorly managed diabetes. For diabetes nurses to better understand persons with diabetes experienced challenges and needs regarding self-management and further for persons with T2D to take an active role in managing their condition, an instrument measuring this is needed. DESIGN: Instrument development and psychometric testing of the content and construct validity, factor structure and reliability. METHOD: The SMASc was psychometric tested on a sample of participants (September 2017-November 2017) with a confirmed diagnosis of T2D (N = 104). RESULTS: Psychometric findings were satisfactory and supported the scale´s reliability. Cronbach's alpha, CVI and goodness-of-fit were acceptable. CONCLUSION: Self-Management Assessment Scale is a short validated screening instrument, which can indicate possible barriers for self-management that ought to be approached during the conversation between the person with T2D and the primary healthcare nurses. Therefore, it is a promising instrument to be used to facilitate person-centred guidance and to improve self-management of people living with T2D.

20.
JMIR Nurs ; 2(1): e14194, 2019.
Article in English | MEDLINE | ID: mdl-34345770

ABSTRACT

BACKGROUND: Most people in modern societies now use the Internet to obtain health-related information. By giving patients knowledge, digital health information is considered to increase patient involvement and patient-centered interactions in health care. However, concerns are raised about the varying quality of health-related websites and low health literacy in the population. There is a gap in the current knowledge of nurses' experiences with Internet-informed patients. OBJECTIVE: The objective of this study was to explore primary health care nurses' experiences of consultations with patients who present health-related information from the Internet. METHODS: This is a qualitative study based on interviews with 9 primary health care nurses. Data were analyzed using qualitative content analysis. Results are reported according to the consolidated criteria for reporting qualitative research guidelines. RESULTS: The phenomenon of Internet-informed patients was considered to change the usual rules in health care, affecting attributes and actions of patients, patterns of interactions in consultations, and roles of nurses and patients. Three categories were identified: (1) Facing the downsides of Googling, (2) Patients as main actors, and (3) Nurse role challenged. Although the benefits of health-related Internet information were described, its negative consequences were emphasized overall. The problems were mainly ascribed to inaccurate Internet information and patients' inability to effectively manage the information. CONCLUSIONS: Our study suggests ambivalent attitudes among nurses toward health-related Internet information. In order to promote equitable care in the digital era, increased awareness in health care about useful strategies for overcoming the difficulties and embracing the benefits of conferring with Internet-informed patients seems to be a legitimate goal.

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