Weaning patients from mechanical ventilation is a complex process that also affects family members, yet their perspectives remain understudied.Aim To explore the lived experiences of family members of patients being weaned from mechanical ventilation in intensive care.Design A qualitative, deductive design was used, inspired by the hermeneutic phenomenological research method described by van Manen.Methods Eight family members were purposively included. The data collection consisted of personal diary notes, written during the patients' weaning phase, and individual semi-structured interviews conducted after patient discharge from intensive care.Results The findings were related to meaningfulness and inherent strength experienced by the family members, which were enhanced by being present at the bedside, near the patient, and involved in care. Family members shaped a temporary structure for their new everyday lives and experienced hope when thinking about the future.Conclusions This study explores the lived experiences of family members, emphasising the importance of being near the patient, touching, maintaining contact, and communicating. Family members wish to be involved according to their preferences and capabilities. Such involvement creates meaningfulness, which further promotes family members' inherent strength. Healthcare professionals play a vital role, highlighting the advantages of adopting a person-centred approach towards the family members by considering their resources, capabilities, and suffering, which vary over time and among different persons. To care for family members during patient weaning, healthcare professionals need to understand their needs and contributions, making the delivery of person-centred care essential. This study highlights that person-centred care extends beyond the patient to include family members. Recognising and supporting families as active partners in the weaning process is essential, as their involvement strengthens the well-being of both patients and families.Implications for the Profession and/or Patient Care Healthcare professionals should recognise family members as active partners in the weaning process and adapt person-centred care to their individual needs and capacities.Patient or Public Contribution Only the family members of the patients were involved in the study.Reporting Method This study adhered to the COREQ criteria.

Background

Lipedema is a chronic, progressive disorder of adipose tissue that predominantly affects women. Characterized by symmetric, disproportionate fat accumulation — typically in the lower extremities — the condition is frequently misdiagnosed as obesity or lymphedema, leading to delayed treatment and inadequate care. Beyond the physical burden, the distinctive body appearance associated with lipedema may expose affected women to health-related stigma, with potential consequences for psychosocial well-being and quality of life. Despite growing clinical recognition, the psychosocial dimensions of lipedema remain understudied. This study aimed to examine the extent of health-related stigma and perceived social support among women with lipedema and to evaluate their associations with health-related quality of life.

Methods

An online cross-sectional survey was conducted from June to September 2021 among women with a self-reported or clinician-confirmed diagnosis of lipedema. The study 

sample comprised 245 women with lipedema. Health-related stigma was assessed using validated instruments, and perceived social support was measured alongside health-related quality of life. To contextualize findings, an age-matched reference group drawn from a general female population (N = 1,872) was used for comparison. Descriptive and inferential statistics were employed to examine group differences and to explore the associations between stigma, social support, and quality of life domains.

Results

Women with lipedema reported significantly higher levels of health-related stigma compared to the age-matched general female population. This elevated stigma was associated with reduced quality of life across multiple domains, contributing to an overall lower quality of life in the lipedema group. In particular, social and emotional functioning were adversely affected. Conversely, higher levels of perceived social support emerged as a protective factor: women who reported strong social support demonstrated significantly better social and emotional functioning. These findings highlight the dual role of psychosocial factors in shaping health outcomes — stigma as a detrimental force and social support as a buffer — among women living with lipedema.

Conclusions

This study provides evidence that women with lipedema experience substantial health-related stigma that negatively impacts their quality of life, particularly in the social and emotional domains. Strong social support, however, mitigates some of these effects, underscoring its importance as a modifiable factor in patient care. The findings carry direct implications for clinical practice: healthcare professionals must recognize lipedema early and address not only its physical manifestations but also its psychosocial consequences. Routine screening for stigma-related distress and assessment of social support networks should be incorporated into comprehensive lipedema management. Interventions that strengthen social support — including peer support groups, patient education, and counseling — may improve well-being and quality of life in this population. Future research should employ longitudinal designs to clarify causal pathways between stigma, social support, and quality of life outcomes in women with lipedema.

BACKGROUND: Lipoedema is a loose connective tissue disease primarily affecting women characterized by an abnormal build-up of painful fat in the legs and arms. In healthcare, lipoedema is often confused with obesity, and today, diagnostic tools and standardized guidelines for adequate treatments are lacking. Still, research on how affected women manage their health problems and whether they are satisfied with their care remains sparse. Therefore, this study aimed to contribute knowledge on healthcare experiences, and their use and self-reported effects of self-care and treatments among women with lipoedema.

METHODS: This national study, with a mixed-methods design, involved 245 women with lipoedema, recruited from all Lipoedema Association groups across Sweden. Data were collected between June and September 2021 through an online survey that included closed- and open-ended questions on self-care, lipoedema treatment, patient satisfaction, and healthcare experiences. Data were analysed using descriptive and inferential statistics, and qualitative reflexive thematic analysis.

RESULTS: The results showed a delay in diagnosis spanning decades, often preceded by numerous healthcare visits. Many women attempted to cope with their health problems using various self-care approaches. However, lipoedema treatments performed by healthcare providers were deemed the most effective. Overall, the women reported significantly low satisfaction with healthcare. The lowest score, 48 points out of 100, was found in the overall impression of offered care, reflecting perceived inefficiency and unmet expectations. Compared to a general Swedish female population, the most significant gaps were found in the dimensions of information and knowledge, and emotional support, 22 and 25 points lower, respectively. The women described their experiences in healthcare as a challenging and isolated journey. Four themes were generated: A lonely and demanding journey in the healthcare system; An uncertainty of and inconsistency in available healthcare; A burden of being unheard and disrespected in healthcare; and The impact of lack of knowledge in healthcare.

CONCLUSIONS: Seeking care for lipoedema is a long and burdensome journey with limited access to tailored care. Many women make significant efforts to manage their health problems independently. This emphasizes a need for timely lipoedema diagnosis, improved support, and better access to effective treatments.

Aim: To explore the experiences of sexual health and intimate relationships in women with lipedema. Design: A qualitative interview study.

Methods: Sixteen women with lipedema recruited from a national lipedema association group in Sweden participated. Data were collected between October 2023 and February 2024 and analysed using content analysis.

Results: Four main categories were identified. Being burdened by body shame highlighted the women's body dissatisfaction, difficulties in self-acceptance and shame when being naked in front of their partners. Being hindered by an aching and heavy body captured the experiences of bodily pain and heaviness in intimate situations. Being torn between desire and avoidance revealed that the women longed for intimacy but adopted different strategies to avoid it. Being affected by what is said and what is left unsaid showed the role of the partner's approach as well as the strain of not discussing sexual problems with partners or healthcare providers.

Conclusion: Women with lipedema experience physical, psychological and relational challenges in sexual life and intimacy. Still, these challenges remain unaddressed in healthcare settings.

Lipedema is a chronic disease in adipose tissue affecting women. The distinctive body appearance in lipedema, often mistaken for obesity, may be detrimental to social life. In our online cross-sectional survey study, conducted from June to September 2021 among 245 women with lipedema, we found significantly more health-related stigma compared to an aged-matched general female population (N = 1872), leading to an overall lower quality of life. Conversely, strong social support was associated with better social and emotional functioning. As such, healthcare professionals must, even in the early stages, recognize this disease and address its impact on psychosocial health and well-being.

BACKGROUND: Lifestyle factors, including diet, physical activity, smoking cessation, and stress management, are crucial for reducing the risk of recurrent cardiac events and promoting overall cardiovascular health. Despite their clinical significance, the experiences of patients with coronary heart disease (CHD) in adjusting to and maintaining these lifestyle changes after their first percutaneous coronary intervention (PCI) remain relatively unexplored, especially in China. This study aims to address this gap by exploring the experiences of patients with CHD in central China as they make adjustments to healthy lifestyles following their first PCI.

METHODS: A qualitative descriptive study was designed. Eighteen participants from a regional teaching hospital in central China participated in the study conducted from 2022 to 2023. Data were collected through face-to-face interviews guided by semi-structured questions, resulting in five sub-themes and one main theme emerging from the thematic analysis.

RESULTS: Adjusting to a healthy lifestyle post-PCI was described as "moving forward despite obstacles", reflecting resilience and determination in overcoming challenges to improve health and well-being. The participants initially trusted their doctors' recommendations and became motivated by the positive effects of lifestyle changes and the desire to alleviate the burden of their loved ones. However, they also faced challenges related to Chinese traditional culture and other physical issues.

CONCLUSION: Adjustment to a healthy lifestyle is essential but challenging. Our findings highlight the influence of external and internal factors on behavioural changes and underscore the need for health professionals to understand and support patients' experiences to inspire and sustain their lifestyle adjustments.

TRIAL REGISTRATION: Not applicable.

Introduction

Early integration of palliative care (PC) alongside oncology care is widely recognised as beneficial for patients and their next of kin. Sharing the responsibility with colleagues can ease the burden for the physician. However, according to our previous research with physicians, while two out of three expressed a positive attitude towards early integration of PC, only one-third actually implemented it. To facilitate the early integration of PC, the physicians' own attitudes need to be highlighted. The aim of this study was to explore Swedish physicians' personal experiences and their view of the role of the organisation when referring patients with cancer to PC.

Methods

A study was performed using a study-specific questionnaire. Physicians working with cancer patients within different specialties participated. Data were collected in a cross-sectional online survey. Quantitative data (items) were analysed using descriptive statistics and open-ended responses were analysed with thematic analysis.

Results

In total, 130 physicians participated. The majority reported feeling confident when introducing PC to patients (97.6%) They expressed a high degree of medical and emotional relief when the patients were enrolled in PC. Organisational challenges were reported in gaining acceptance from PC providers (50.9%) and in ensuring equal access to PC (54.5%). Thematic analysis identified multifaceted aspects related to navigating barriers and facilitators in the referral process, the benefits achieved from mutual collaboration with PC providers, and the physician related challenges when managing the organisational labyrinth.

Conclusion

The physicians expressed confidence in discussing PC with patients. They experienced personal, professional, patient-related and organisational benefits when patients were enrolled in PC. A majority expressed that the patients did not have equal access to PC. To reach this goal, organisational aspects, including communication pathways and geographical restrictions, need to be addressed.

BACKGROUND: Weaning from mechanical ventilation is a complex and central intensive care process. This complexity indicates that the challenges of weaning must be explored from different perspectives. Furthermore, physicians' experiences and the factors influencing their decision-making regarding weaning are unclear.

OBJECTIVES: This study aimed to explore and describe the factors influencing physicians' decision-making when weaning patients from invasive mechanical ventilation in Swedish intensive care units (ICUs).

METHODS: This qualitative study used an exploratory and descriptive design with qualitative content analysis. Sixteen physicians from five ICUs across Sweden were purposively included and interviewed regarding their weaning experiences.

FINDINGS: The physicians expressed that prioritising the patient's well-being was evident, and there was agreement that both the physical and mental condition of the patient had a substantial impact on decision-making. Furthermore, there was a lack of agreement on whether patients should be involved in the weaning process and how their resources, needs, and wishes should be included in decision-making. In addition, there were factors not directly linked to the patient but which still influenced decision-making, such as the available resources and teamwork. Sometimes, it was difficult to point out the basis for decisions; in that decisions were made by gut feeling, intuition, or clinical experience.

CONCLUSION: Physicians' decision-making regarding weaning was a dynamic process influenced by several factors. These factors were related to the patient's condition and the structure for weaning. Increased understanding of weaning from the physicians' and ICU teams' perspectives may improve the weaning process by broadening the knowledge about the aspects influencing the decision-making.

Background

This study aimed to translate the Caregiver Task Inventory-45 (CTI-45) into Mandarin and evaluate its psychometric properties for use among family caregivers of stroke survivors in China.

Methods

This methodological study included cognitive interviews and a psychometric evaluation of the CTI-45. Questionnaires were distributed to family caregivers at four tertiary hospitals in Tianjin, China. In addition to the eight family caregivers who participated in the cognitive interviews, 251 family caregivers of stroke survivors aged ≥ 18 years, who were biologically or legally related to the survivors, were providing unpaid home care, and were proficient in Mandarin, completed the survey. The CTI-45 was translated according to the European Organisation for Research and Treatment of Cancer (EORTC) translation protocol. Cognitive interviews were then conducted to evaluate the Mandarin CTI-45 using ordinal confirmatory factor analysis (CFA). The suggested one- and three-factor models were both evaluated. Internal consistency reliability was assessed using ordinal alpha and ordinal omega coefficients.

Results

The suggested three-factor model was superior compared to the one-factor model and demonstrated acceptable model fit (RMSEA = 0.042, CFI = 0.996, TLI = 0.995, SRMR = 0.072). All three scales demonstrated excellent reliability according to ordinal alpha and ordinal omega: Direct care to the patient 0.96/0.92, Intrapersonal tasks 0.97/0.94, and Interpersonal ties 0.95/0.90.

Conclusions

The Mandarin version of the CTI-45 demonstrated good psychometric properties and could be used to assess the multidimensional care needs of family caregivers caring for stroke survivors.

Aims

Sense of coherence (SOC) allows individuals to be more resilient to adverse life events, and it is associated with quality of life (QoL), but its long-term effects are unknown in patients with myocardial infarction. This study aimed to examine longitudinal variations of SOC and associations between SOC at baseline and QoL at a 10-year follow-up in relation to gender.

Methods and results

This longitudinal study included 61 patients, 16 women and 45 men with a mean age of 57.1 +/- 6.5 years, who completed a questionnaire package in relation to hospital discharge, 2 years, 5 years, and 10 years later. The questionnaire package included the Sense of Coherence Scale (SOC-13), 12-item Short Form Health Survey, and Seattle Angina Questionnaire. Data were analysed with repeated measure ANOVA and linear regression. Overall, SOC was stable over the 10-year follow-up, but comprehensibility improved significantly (P = 0.003). A significant main effect for gender was shown regarding SOC total (P = 0.032) and comprehensibility (P = 0.034); women reported lower SOC compared with men. An interaction effect between gender and time was shown in comprehensibility (P = 0.007), as the differences between genders decreased over time. The SOC-13 was significantly associated with all dimensions of QoL; three significant interaction effects showed that the associations were true for women but not for men.

Conclusion

The SOC is an important aspect to consider in the care of patients with myocardial infarction, as it is associated with long-term QoL, particularly for women. This means that SOC can also be used to identify patients who are at risk for poor QoL after a myocardial infarction.