Umeå University's logo

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.

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.

Background: Digitalization has profoundly transformed health care delivery, especially within primary health care, as a crucial avenue for providing accessible, cost-effective care. While eHealth services are frequently highlighted for improving health care availability and promoting equality, it is essential to recognize that digitalization can inadvertently exclude individuals who lack the prerequisites to use eHealth services, that is, those with low eHealth literacy. Previous research has identified lower eHealth literacy among older individuals, those with lower educational levels, and those who use the internet less frequently. However, in a Swedish context, only a few studies have investigated eHealth literacy. Objective: This study investigated eHealth literacy and its association with health-related internet use and sociodemographic characteristics among primary health care visitors. Methods: This cross-sectional study used a quantitative, descriptive approach. Swedish-speaking patients visiting a primary health care center participated by answering the multidimensional eHealth Literacy Questionnaire (eHLQ) and questions regarding sociodemographic characteristics and internet usage. The study compared mean scores using the Mann-Whitney U test and the Kruskal-Wallis test. A logistic regression analysis also explored the associations between eHealth literacy and significant independent variables identified in the univariate analyses. Results: As a group, the 172 participants rated highest in understanding and engagement with their health (median eHLQ score 3, IQR 2.8-3.4), as well as in feeling secure about the confidentiality of eHealth services (median eHLQ score 3, IQR 2-3), while they rated lower in motivation to use eHealth (median eHLQ score 2.6, IQR 2-3), the suitability of eHealth services to their personal needs (median eHLQ score 2.75, IQR 2-3), and their perceived ability to understand and use health-related internet information (median eHLQ score 2.6, IQR 2-3). The logistic regression analysis identified that lower eHealth literacy was associated with older age, particularly in domains related to finding, understanding, and using health-related internet information (odds ratio [OR] 1.02, 95% CI 1-1.05; P=.03); digital technology use (OR 1.05, 95% CI 1.02-1.08; P<.001); and accessing well-functioning eHealth services (OR 1.02, 95% CI 1-1.05; P=.03). Additionally, in the logistic regression analysis, perceiving health-related internet information as not useful was linked to lower literacy in all eHLQ domains except one. Conclusions: Our findings regarding the primary challenges within our sample underscore the importance of developing and tailoring eHealth services to accommodate users' individual needs better, enhancing motivation for eHealth use, and continuing efforts to improve overall health literacy. These measures, which both eHealth developers and health care professionals should consider, are crucial for addressing the digital divide and expanding access to eHealth services for as many people as possible.

Objectives: Hereditary cancer risks can be effectively managed if at-risk relatives enroll in surveillance and preventive care. Family-mediated risk disclosure has internationally been shown to be incomplete, selective and leave over a third of eligible at-risk individuals without access to genetic counseling. We explored patients handling of cancer risk information in practice. 

Methods: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses. 

Results: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information. 

Conclusions: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives. 

Practice implications: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family’s inheritance pattern explained.

Assessment of self-conscious emotions is important to develop tailored interventions for people with chronic obstructive pulmonary disease (COPD). Previous instruments have largely been developed for mental health populations. The Self-Conscious Emotions in COPD Questionnaire was the first instrument to assess self-conscious emotions in people with COPD, but it was only available in English.

The aim was to translate the Self-Conscious Emotions in COPD Questionnaire into Swedish and to evaluate its psychometric properties and internal structure in a Swedish context.

The translation process included forward and backward translation, a multidisciplinary meeting, assessment of content validity, and cognitive interviews. The translated instrument was tested in a sample of 173 people with COPD between September 2021 and September 2022. Parallel analysis (PA), exploratory factor analysis (EFA), and test-retest reliability was performed.

The content validity index (CVI) for the instrument was 0.88. Based on the PA, an EFA with a two-factor solution was conducted, with a high Cronbach's alpha (0.786-0.821), and one item about self-blame was excluded. The two factors were labelled: The burden of living with a disability and The desire to hide vulnerability. Test-retest reliability showed no difference between scale scores on factor or item level, except for one item.

The Swedish Self-Conscious Emotions in COPD showed good validity and reliability. One item was excluded from the two subscales, indicating that the instrument needs to be further developed to cover the concept of self-blame. The instrument is expected to be a valuable tool for assessing self-conscious emotions in people with COPD.

Objective: Diagnosis of cancer is challenging in primary care due to the low incidence of cancer cases in primary care practice. A prolonged diagnostic interval may be due to doctor, patient or system factors, or may be due to the characteristics of the cancer itself. The objective of this study was to learn from Primary Care Physicians’ (PCP) experiences of incidents when they had failed to think of, or act on, a cancer diagnosis.

Design: A qualitative, online survey eliciting PCP narratives. Thematic analysis was used to analyse the data.

Setting and subjects: A primary care study, with narratives from 159 PCPs in 23 European countries.

Main outcome measures: PCPs’ narratives on the question ‘If you saw this patient with cancer presenting in the same way today, what would you do differently?

Results: The main themes identified were: thinking broadly; improvement in communication and clinical management; use of other available resources and ‘I wouldn’t do anything differently’.

Conclusion (Implications): To achieve more timely cancer diagnosis, PCPs need to provide a long-term, holistic and active approach with effective communication, and to ensure shared decision-making, follow-up and continuing re-assessment of the patients’ clinical conditions.

Background: Standardized cancer patient pathways as a new policy has been adopted in healthcare to improve the quality of cancer care. Within the health systems, actors at different levels manage the adoption of new policies to develop healthcare. The various actors on different levels play an important role and influence the policy adoption process. Thus, knowledge about how these actors use strategies when adopting cancer patient pathways as a policy in the health system becomes central.

Method: The study's aim was to explore how actors at different organizational levels in the health system adopted cancer patient pathways. Our overarching case was the Swedish health system at the national, regional, and local levels. Constructivist Grounded Theory Method was used to collect and analyze qualitative interviews with persons working in organizations directly involved in adopting cancer patient pathways at each level. Twelve individual and nine group interviews were conducted including 53 participants.

Results: Organizational actors at three different levels used distinct strategies during the adoption of cancer patient pathways: acting as-missionaries, fixers, and doers. Acting as missionaries consisted of preaching the idea of cancer patient pathways and framing it with a common purpose to agree upon. Acting as fixers entailed creating a space to put cancer patient pathways into practice and overcome challenges to this. Acting as doers comprised balancing breadth and speed in healthcare provision with not being involved in the development of cancer patient pathways for the local context. These strategies were not developed in isolation from the other organizational levels but rather, each level interacted with one another.

Conclusions: When adopting new policies, it is important to be aware of the different strategies and actors at various organizational levels in health systems. Even when actors on different levels developed separate strategies, if these contribute to fulfilling the four domains of inter-organizational collaboration, they can work well together to adopt new policies. Our study highlighted that the application of two domains was lacking, which meant that local actors were not sufficiently involved in collaboration, thus constricting the local use and optimization of cancer patient pathways in practice.

Background: While primary care physicians (PCPs) play a key role in cancer detection, they can find cancer diagnosis challenging, and some patients have considerable delays between presentation and onward referral.

Aim: To explore European PCPs’ experiences and views on cases where they considered that they had been slow to think of, or act on, a possible cancer diagnosis.

Design & setting: A multicentre European qualitative study, based on an online survey with open-ended questions, asking PCPs for their narratives about cases when they had missed a diagnosis of cancer.

Method: Using maximum variation sampling, PCPs in 23 European countries were asked to describe what happened in a case where they were slow to think of a cancer diagnosis, and for their views on why it happened. Thematic analysis was used to analyse the data.

Results: A total of 158 PCPs completed the questionnaire. The main themes were as follows: patients’ descriptions did not suggest cancer; distracting factors reduced PCPs’ cancer suspicions; patients’ hesitancy delayed the diagnosis; system factors not facilitating timely diagnosis; PCPs felt that they had acted wrongly; and problems with communicating adequately.

Conclusion: The study identified six overarching themes that need to be addressed. Doing so should reduce morbidity and mortality in the small proportion of patients who have a significant, avoidable delay in their cancer diagnosis. The ‘Swiss cheese’ model of accident causation showed how the themes related to each other.

Objective: To compare the diagnostic interval for patients with colorectal cancer before and after the introduction of cancer patient pathways in northern Sweden.

Design: A retrospective study comparing two cohorts (2012 and 2018) of patients diagnosed with colorectal cancer before and after the introduction of cancer patient pathways in 2016.

Setting: Three counties in northern Sweden with large sparsely populated areas and some cities (637143 residents ∼5.1 residents/km2).

Subjects: Patients were included from the Swedish Cancer Register. Electronic health records reviews were performed and linked to socioeconomic data from Statistics Sweden.

Main outcome measures: Differences in the diagnostic intervals, the patient intervals and the characteristics associated with the longest diagnostic intervals and investigations starting at the emergency department.

Results: The two cohorts included 411 patients in 2012 and 445 patients in 2018. The median diagnostic interval was reduced from 47 days (IQI 18–99) to 29 days (IQI 9–74) (p < 0.001) after the introduction of cancer patient pathways in general. Though for the cases of cancer in the right-side (ascended) colon, the reduction of the diagnostic interval was not observed and it remained associated with investigations starting at the emergency department.

Conclusion: Our results indicate that cancer patient pathways contributed to an improvement in the diagnostic interval for patients with colorectal cancer in general, yet not for patients with cancer in the right-side colon.

Implication: In general, cancer patient pathways seem to reduce the diagnostic interval for colorectal cancer but it is not a sufficient solution for all colorectal cancer localisations.

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.