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We aimed to survey the findings of phenomenological studies built up in the field of diabetes care in Sweden. This is a meta-synthesis of phenomenological studies on experiences related to diabetes in Sweden focusing on learning to live with diabetes. We proceeded by reference to the seven phases of Noblit & Hare. We examined papers from seven phenomenological studies on learning to live with diabetes in Sweden. From the papers, which describe the experience of living with diabetes, three overarching themes were selected—perception and awareness of the body; integration and responsibility; and presence of others who provide support. From those describing the expert's experience, an overarching theme emerged—encouraging reflection in persons with diabetes. We interpreted each of these themes in phenomenological terms and compared them with theories in Japan. Persons with diabetes take responsibility for coping with a range of things brought on by the illness and learn to live with diabetes. Experts support these persons so they can see their world objectively and critically scrutinize it. By building a model of diabetes care in Japan that references Scandinavian human science, it will be possible to find new approaches that support learning at the existential level. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Temporomandibular disorders (TMD) are common and therefore managed by dentists on a daily basis. However, patients with TMD consistently go undetected and therefore untreated in dentistry. The reasons for these shortcomings have not been fully explored, specifically with regard to patients' perspectives. Therefore, this study aimed to explore patients' experiences of TMD and related treatment, with special focus on the experiences of having TMD, factors related to seeking care, and perspectives on received treatment. Methods: Purposive sampling was used to recruit adult patients at the Public Dental Health services (PDHS) in the Region of Västerbotten, Sweden, during 2019. Individual semi-structured interviews were conducted and analysed using Qualitative Content Analysis. Sixteen patients were interviewed (ten women and six men, 20–65 years). The interviews probed the patients' perspectives of having TMD, seeking care, and receiving treatment. All participants were also examined according to the Diagnostic Criteria for TMD (DC/TMD) and qualified for at least one DC/TMD diagnosis. Results: The data analysis led to the main theme Seeking care when the situation becomes untenable, but dental care fails to meet all needs. The patients expressed worry and social discomfort because of the symptoms but still strived to have an as normal daily life as possible. However, severe symptoms and associated consequences compelled them to seek professional help. Experiences of distrust together with challenges to access the PDHS were identified and related to the patients' unfulfilled expectations. Conclusions: Patients' reported experiences indicate that receiving timely and appropriate care is more of an unfulfilled expectation than the current state of management of patients with TMD in dentistry. [ABSTRACT FROM AUTHOR]

Background: Migrants are overrepresented among people living with HIV in Sweden as they often face conditions that increased their risk and vulnerability for HIV/STI infections prior, during or after migration. Yet, there is limited research on their experiences and perceptions of living with HIV in the Swedish context. This study aims to explore migrants' experiences of living with HIV in Sweden. Methods: This is a qualitative study based on in-depth interviews with 13 migrants from 11 countries living with HIV in Sweden. Interviews were analysed with thematic analysis using an intersectional perspective to explore the interactions of multiple social identities such as ethnicity, socio-economic status, gender, age, and sexual orientation that shape an individual's or group's experiences. Results: The analysis resulted in a main theme: 'Prioritizing social integration-HIV ends up in second place', which is based on four subthemes: 'Better opportunities in the new country than what the home country could offer', 'Better conditions for LGBTQI people than in the home country', 'Navigating a new system: linguistic and bureaucratic challenges' and 'Feeling like a second-class resident: racism, xenophobia and multiple discrimination'. The results suggest that migrants living with HIV in Sweden experience social integration as a greater challenge than HIV infection. Although the new country offers opportunities for better living conditions, many participants described being challenged in their daily life by linguistic and structural barriers in their encounters with public services. They are facing multiple discrimination simultaneously as migrants due to their multiple and intersecting identities (e.g. being non-white, foreigners/foreign-born and non-Swedish speakers), which is compounded by HIV status and thus limit their opportunities in the new country and too often result in an existence of exclusion. Conclusion: The study shows that most of the challenges that migrants living with HIV face are related to their status as migrants rather than HIV status, which is often not known by the public or authorities. These challenges are similar, but still differ depending on social position, previous experiences, time since arrival and since diagnosis. This emphasizes the importance of both intersectional, intersectoral and multisectoral approaches to address reported issues. [ABSTRACT FROM AUTHOR]

BACKGROUND: Depression is a common cause of sickness absence (SA) and also highly associated with stigma. Few studies have addressed the role of stigma in relation to SA. OBJECTIVE: To investigate if attitudes to depression were associated with the public's opinion of depression as a valid reason of SA. METHODS: The study population (n = 2413) originated from a web-based panel of citizens. The survey included a short vignette describing a person with symptoms of depression and the person's work tasks, followed by a question on recommendation of SA. Negative attitudes were measured by the Depression Stigma Scale. Logistic regressions were used to estimate the odds ratios (OR) for the likelihood of not recommending SA, controlling for individual and work-related co-variates. RESULTS: The crude association between negative attitudes and not recommending SA was OR 2.15 (95% CI, 1.76–2.62). In the fully adjusted model the OR was 1.76 (95% CI, 1.40 –2.21) for not recommending SA. CONCLUSIONS: Participants with negative attitudes to depression were more likely to not consider depression as a valid reason of sickness absence. The study supports theories on layered stigma; attitudes from one arena are related to other arenas. Future studies are needed to confirm our findings. [ABSTRACT FROM AUTHOR]

Background: The prevalence of diagnosed Autism Spectrum Disorder (ASD) has increased substantially across the world. Much – or even most – prevalence increase seems to reflect changes in diagnostic practice and ascertainment. A key part of ASD assessment is to document that the relevant symptoms are associated with clinical impairment. The aim of the present study is to capitalize on a nationwide longitudinal study spanning 15 consecutive birth year cohorts in order to investigate whether there has been a secular change in how parents perceive the impairment and suffering conferred by autism symptomatology in their children. Methods: Data came from the Child and Adolescent Twin Study in Sweden (27,240 individuals), where parents had reported on their child's ASD symptoms and impairment. Impairment due to ASD symptoms was regressed on an ASD symptom score across time. This was done for five 3‐year birth cohorts (1995–1997, 1998–2000, 2001–2003, 2004–2006, and 2007–2009). Results: Reported impairment increased with consecutively later birth cohorts. This was evident across all levels of autism symptomatology. At clinically relevant levels of symptomatology, parents of those born 2007–2009 reported a 23% higher degree of impairment as compared with parents of those born in 1995–1997. The relative difference, however, was even greater at levels that previously would have been considered below the diagnostic threshold. Discussion: The results presented here contribute to the notion of a growing diffuseness in the conceptualization of the ASD diagnosis by adding the element of secular changes in the parental perception of the consequences of ASD symptom expression. [ABSTRACT FROM AUTHOR]

Lipedema is a chronic, progressive disease that almost exclusively affects women and often misdiagnosed as obesity or primary lymphedema. Research concerning lipedema is sparse, and there is a lack of studies focusing on women's experiences of living with the illness. We interviewed fourteen women with lipedema with the aim of describing their experiences of living with lipedema. Our results show that women felt controlled by their body, and were fat-shamed and viewed by others as a person who lacked character. They received unsupportive advice on how to manage from healthcare, and blamed themselves while striving to take responsibility. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to describe patient experiences of received primary care for low back pain (LBP) according to the BetterBack Model of Care (MoC) with a focus on illness beliefs and self-management enablement. Methods: Individual interviews were conducted with 15 adults 4–14 months after receiving treatment according to the BetterBack MoC for LBP in primary care in Sweden. Data were analysed using content analysis. Results: When analysing the data, the following theme emerged; "Participant understanding of their treatment for low back pain and self-management strategies—a matter of support systems", comprising the following categories: "Knowledge translation", "Interaction and dialogue", "The health care professional support" and "Form organization". Participants experienced that they had better knowledge about their LBP and received tools to better manage their health condition. The participants expressed good communication with the treating physiotherapist and provided suggestions to further improve the treatment of LBP. Conclusions: Participants experienced that they had gained new knowledge about their health problems and after the treatment they had the tools to handle their back problems. This suggests that the BetterBack MoC may be used as a basis for a support system to provide valuable tools for self-management for patients with low back pain. [ABSTRACT FROM AUTHOR]

Background: Person‐centred care implies a change in interaction between care professionals and patients where patients are not passive recipients but co‐producers of care. The interactional practices of person‐centred care remain largely unexplored. Objective: This study focuses on the analysis of disagreements, which are described as an important part in the co‐production of knowledge in interaction. Design: A qualitative exploratory study using conversation analysis. Setting and participants: Data were collected from a nurse‐led person‐centred intervention in a hospital outpatient setting. Interactions between adult patients with irritable bowel syndrome (n = 17) and a registered nurse were audio‐recorded. COREQ guidelines were applied. Results: Disagreements were found after demonstration of the nurse's or patients' respective professional or personal knowledge. Disagreements were also evident when deciding on strategies for self‐management. Although negotiations between opposing views of the nurse and patient were seen as important, the patient generally claimed final authority both in knowing how IBS is perceived and in the right to choose self‐management strategies. The nurse generally oriented towards patient authority, but instances of demonstration of nurse authority despite patient resistance were also found. Discussion and conclusions: This study provides information on how co‐production of knowledge and decisions occur in the context of a person‐centred care intervention. Negotiations between nurse and patient views require a flexible approach to communication, adapting interaction to each context while bearing in mind the patients having the final authority. To facilitate co‐production, the patient's role and responsibilities in interaction should be explicitly stated. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise the need to include the perspectives of children and adolescents with cancer in research and practice • To identify the value of seeking children's and adolescents' perspectives in developing child-centred interventions • To gain a greater understanding of the experiences of children and adolescents following a diagnosis of cancer Background All healthcare professionals working with children should have a child-centred perspective, and should be responsive to children and adolescents who want to talk about their thoughts and feelings. The child's or adolescent's story is the starting point for mutual understanding between them and the healthcare professional, and is the basis for shared decision-making between patients and healthcare professionals in child-centred care. Aim To advance understanding of how Swedish children and adolescents with cancer perceived the effects of the disease and its treatment on their everyday life. Method Ten girls and five boys, aged between five and 18 years, with cancer were interviewed individually using four communication tools. The interviews lasted between 20 and 65 minutes and took place without their parents present. The data were analysed using content analysis. Findings Transition to an unpredictable everyday life was identified as a main theme, with five subthemes: struggling with side effects of the cancer and its treatment; treatment as an 'emotional rollercoaster'; changed self and being vulnerable; changed social life; and concerns about academic achievement. Conclusion To provide effective support and care for children and adolescents with cancer, healthcare professionals should strive to listen to them and focus on their perspectives. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study was to measure the level of empowerment and identify its correlates in young persons with congenital heart disease. Study design: Patients aged 14–18 years with congenital heart disease, and under active follow-up in one of four paediatric cardiology centres in Sweden were invited to participate in a cross-sectional study. A total of 202 young persons returned the questionnaires. Patient empowerment was measured with the Gothenburg Young Persons Empowerment Scale that allows the calculation of total and subscale scores. Univariate and multivariate linear regression analyses were undertaken to analyse possible correlates, including: sex, age, health behaviours, knowledge of congenital heart disease, quality of life, patient-reported health, congenital heart disease complexity, transition readiness and illness perception. Results: The mean empowerment score was 54.6±10.6 (scale of 15–75). Univariate analyses showed that empowerment was associated with age, quality of life, transition readiness, illness perception, health behaviours and patient-reported health (perceived physical appearance, treatment anxiety, cognitive problems and communication issues). However, multivariable linear regression analyses identified that only transition readiness (β=0.28, P <0.001) and communication (β=0.36, P <0.001) had a positive association with patient empowerment. These variables were also significantly associated with the subscale scores of the empowerment scale of knowledge and understanding (P <0.001), shared decision-making (P <0.001) and enabling others (P <0.01). The overall models' explained variance ranged from 8% to 37%. Conclusion: Patient empowerment was associated with transition readiness and fewer problems communicating. While it is not possible to establish the directionality of the associations, interventions looking to increase empowerment could benefit from using these variables (or measurements) for evaluation purposes. [ABSTRACT FROM AUTHOR]

Aims and objectives To describe the variation of conceptions of being ill and hospitalised, from the perspective of healthcare-professional patients. Background Previous literature focuses on either physicians' or nurses' experiences of being a patient, without aiming at determining a variation of ways of understanding that phenomena. Nor have we been able to identify any study reporting other healthcare professionals' experiences. Design This study has an inductive descriptive design. Methods Qualitative interviews with healthcare professionals ( n = 16), who had been hospitalised for at least two days. Phenomenographic data analysis was conducted. Results The feelings of security were based on knowledge, insight and trust, and acceptance of the healthcare system. Being exposed and totally dependent due to illness provoked feelings of vulnerability and insecurity. The patients used their knowledge to achieve participation in the care. The more severe they perceived their illness to be, the less they wanted to participate and the more they expressed a need for being allowed to surrender control. The patients' ideal picture of care was sometimes disrupted, and based on their experience, they criticised care and made suggestions that could contribute to general care improvements. Conclusions Healthcare-professional patients have various conceptions of being ill and hospitalised. Based on the general nature of the many needs expressed, we believe that the insights provided in this study can be transferred so as to also be valid for lay patients. Possibly, an overhaul of routines for discharge planning and follow-up, and adopting a person-centred approach to care, can resolve some of the identified shortcomings. Relevance to clinical practice The results can be used for the purpose of developing knowledge for healthcare professions and for educational purposes. [ABSTRACT FROM AUTHOR]

Background Spousal concordance on risk factors and lifestyle habits exists and can partly be explained by patients' and spouses' health beliefs and underuse of cardiac rehabilitation. However, there have been very few qualitative comparisons of health beliefs between patients and spouses after a cardiac event. Aim To examine and qualitatively compare the health beliefs of patients with coronary heart disease and their spouses about lifestyle habits, 1 year after the cardiac event. Design Explorative and descriptive. Method Semi-structured focus group interviews were conducted with patients (n = 14) 1 year after a cardiac event, as well as individual interviews with spouses (n = 8). The transcriptions underwent a deductive qualitative content analysis, within the framework of the Health Belief Model. Findings Patients' and spouses' health beliefs about lifestyle habits qualitatively differed in most predetermined main analytical categories of the Health Belief Model. The patients relied more on their own capacity and the healthcare system than on collaboration with their spouses who instead emphasised the importance of mutual activities to establish lifestyle habits. The spouses therefore experienced problems with different family preferences compared to the patients' wishes. Moreover, only patients believed supervised exercise was beneficial for risk reduction of coronary heart disease and they related barriers for medication to a self-healing body and a meaningless life without relatives and old habits. Patients and spouses agreed that despite the severity of illness, life was captured and that normalisation to a life as usual was possible. Conclusion The patients' and spouses' qualitatively different health beliefs regarding health-related behaviours imply a new approach. Nurses and associated professionals need to follow-up patients' and spouses' in primary health care to support them in a tailored way, for example in problem-based sessions. Recognition and understanding of their different views and otherness could lead to compromises and goals to work with. [ABSTRACT FROM AUTHOR]

In order to describe experiences of living with opioid dependence, thirteen interviews were conducted with people participating in medication-assisted treatment. The results showed that living with opioid dependence is aboutthe two-faced drug. The participant's past was a constant burden in life, and the drug filled a spiritual emptiness. The participant's describeda life in chaosand pain, and furthermore, a life without dignity and in alienation. Opioid dependence means great suffering. Having a holistic view and by gaining an understanding of the complexities of opioid dependence, healthcare professionals can provide nonjudgmental and respectful treatment. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore the associations between illness perceptions of fatigue, sense of coherence and stress in patients one year after myocardial infarction. Background Post-myocardial infarction fatigue is a stressful symptom that is difficult to cope with. Patients' illness perceptions of fatigue guide professionals in predicting how individuals will respond emotionally and cognitively to symptoms. Individuals' sense of coherence can be seen as a coping resource in managing stressors. Design A cross-sectional study design was used. Method One year post-myocardial infarction, a total of 74 patients still experiencing fatigue completed four questionnaires: the Multidimensional Fatigue Scale Inventory -20, the Brief Illness Perception Questionnaire, the Sense of Coherence scale (sense of coherence-13) and a single-item measure of stress symptoms. Descriptive statistics, correlations and stepwise regression analysis were carried out. Results Strong negative associations were found between illness perceptions of fatigue, sense of coherence and stress. Sense of coherence has an impact on illness perceptions of fatigue. Of the dimensions of sense of coherence, comprehensibility seemed to play the greatest role in explaining illness perceptions of fatigue one year after myocardial infarction. Conclusion To strengthen patients' coping resources, health-care professionals should create opportunities for patients to gain individual-level knowledge that allows them to distinguish between common fatigue symptoms and warning signs for myocardial infarction. Relevance to clinical practice There is a need to improve strategies for coping with fatigue. It is also essential to identify patients with fatigue after myocardial infarction, as they need explanations for their symptoms and extra support. [ABSTRACT FROM AUTHOR]