Objectives 

Lipedema is associated with multiple health problems which limit daily life. Still, the disease is frequently misunderstood in healthcare, and research from the patient’s perspective is relatively sparse. A Swedish national survey was conducted, to comprehensively examine health and quality of life among women with lipedema. Furthermore, the study explored participants’ self-care, self-reported effects of different treatments, and experiences when seeking healthcare.

Results

In total, 245 women with lipedema responded to the survey. The majority were 40-59 years old, and over half of the participants were in lipedema stage 3. Overall, in most age groups, women with lipoedema scored approximately 25-35 points lower in their physical and mental health than an age-matched general Swedish female population. Moreover, it often took decades from disease onset, including many healthcare visits, to be correctly diagnosed. Compared to a general female population, women with lipedema scored significantly lower on satisfaction with healthcare in dimensions of availability, information and knowledge, Experiences of emotional support, continuity and coordination, respect and treatment, and participation and involvement. Particularly low scores were recorded in participants’ overall impression of healthcare, including expectations of care, perceived efficiency, being cared for, and accessing information about treatment alternatives. Women with lipedema used several different treatments to manage their health problems. Most common were performing low-intensity exercise and using compression garments, of which approximately half of the participants rated as having a good or a very good effect. Less used, but self-reported as more effective, were conservative and surgical treatments performed by healthcare professionals.  

Conclusion

Lipedema has a significant negative impact on health and quality of life. Still, the diagnosis delay is extensive, and women with lipedema generally report low levels of satisfaction with healthcare. Although managing lipedema symptoms with self-care is common, treatments performed in healthcare were identified as having the most positive effects. Unfortunately, these are less likely to be used, suggesting barriers to healthcare. 

Learning objectives

This research aims to contribute to a holistic understanding of lipedema, including the management of lipedema symptoms from the patient’s perspective and the challenges these women face in healthcare. This is essential when implementing effective treatment plans and prioritising healthcare interventions.

At the conclusion of this activity, participants should be able to: 

1. Recognize and describe experiences that women with lipedema have regarding their treatment and healthcare
2. Identify healthcare improvements for women with lipedema

Lipoedema is a disease in adipose tissue associated with multiple health problems that negatively impact the quality of life. However, due to body appearance, the disease is frequently misunderstood as lifestyle-induced obesity, and the affected women are at risk of being fat-shamed and lacking prerequisite support from healthcare providers and other people. Although the negative impact lipoedema has on health and social life, research from the affected women´s perspective is relatively sparse. Therefore, we conducted a Swedish national survey to explore healthcare experiences, health-related stigma, and social support among women with lipoedema. 

Methods

An online survey with closed and open questions assessing sociodemographic, lipoedema characteristics, health-care experiences, health-related stigma, and perceived social support was sent out to all Lipoedema Association groups across Sweden. 

Participants

In total, 245 women with lipoedema responded to the survey. The majority of participants were aged 40-59, and over half were in lipoedema stage 3. Most of the women had a combination of lipoedema type 3 and type 4.

Results

The result showed that it often takes decades, including many healthcare visits, from disease onset to diagnosis. Moreover, participants reported an overall significantly lower patient satisfaction with healthcare compared to a general Swedish female population. Especially low scores were found in the dimensions of Emotional support, Continuity and coordination, and Information and knowledge, which related to participants’ dissatisfaction with healthcare providers’ availability, responsiveness, commitment, and compassion for the patient’s worries and needs. Furthermore, compared to a general Swedish female population, women with lipoedema scored significantly more health-related social impairment. When analyzing data for stigma and health-related quality of life, significant correlations across higher levels of stigma and lower physical and social functioning and emotional well-being were found. In this study, participants generally reported a strong perception of social support, with having particularly good support from significant others (i.e., perceived support from a particular person who is not a family member or friend). Moreover, we found that the association between higher levels of social support and better emotional well-being was significant.

Conclusion

The challenges associated with diagnosis delay and the low satisfaction with healthcare underscore an urgent need for healthcare improvements in the management of lipoedema. The impact health-related stigma and social support have on various aspects of functioning and well-being in women with lipoedema is crucial to acknowledge and address in healthcare to enhance the affected women's quality of life. 

BACKGROUND: Increasing life spans of populations and a growing demand for more advanced care make effective and cost-efficient provision of health care necessary. eHealth technology is often proposed, although research on barriers to and facilitators of the implementation of eHealth technology is still scarce and fragmented. OBJECTIVE: The aim of this study is to explore the perceptions concerning barriers to and facilitators of the implementation of eHealth among policy makers and service users and explore the ways in which their perceptions converge and differ. METHODS: This study used interview data from policy makers at different levels of health care (n=7) and service users enrolled in eHealth interventions (n=25). The analysis included separate qualitative content analyses for the 2 groups and then a second qualitative content analysis to explore differences and commonalities. RESULTS: Implementation barriers perceived by policy makers were that not all service users benefit from eHealth and that there is uncertainty about the impact of eHealth on the work of health care professionals. Policy makers also perceived political decision-making as complex; this included problems related to provision of technical infrastructure and lack of extra resources for health care digitalization. Facilitators were policy makers' conviction that eHealth is what citizens want, their belief in eHealth solutions as beneficial for health care practice, and their belief in the importance of health care digitalization. Barriers for service users comprised capability limitations and varied preferences of service users and a mismatch of technology with user needs, lack of data protection, and their perception of eHealth as being more time consuming. Facilitators for service users were eHealth technology design and match with their skill set, personal feedback and staff support, a sense of privacy, a credible sender, and flexible use of time.There were several commonalities between the 2 stakeholder groups. Facilitators for both groups were the strong impetus toward technology adoption in society and expectations of time flexibility. Both groups perceived barriers in the difficulties of tailoring eHealth, and both groups expressed uncertainty about the care burden distribution. There were also differences: policy makers perceived that their decision-making was very complex and that resources for implementation were limited. Service users highlighted their need to feel that their digital data were protected and that they needed to trust the eHealth sender. CONCLUSIONS: Perceptions about barriers to and facilitators of eHealth implementation varied among stakeholders in different parts of the health care system. The study points to the need to reach an enhanced mutual understanding of priorities and overcome challenges at both the micro and macro levels of the health care system. More well-balanced decisions at the policy-maker level may lead to more effective and sustainable development and future implementation of eHealth.

Introduction: Interventions that support patients to handle the emotional and medical aspects of a long-term health condition is important. One way is to use peer-support groups, to help patients solving problems, increasing their knowledge and making decisions.

Aim: was to investigate the impact on shared decision-making, empowerment and coping after participation in group-learning sessions for patients with long-term conditions (N = 42).

Design: An intervention following a health education programme based on group-learning sessions was established. Eight different programmes were held in five different departments at a regional county hospital in Sweden.

Methods: Questionnaires were analysed using paired-sample t-test.

Results: Results showed that patients might have better opportunities to be more active during their patient encounter after attending the group learning sessions. Interventions directed to patient activation may be one key in future healthcare management, especially concerning long-term conditions. Empowering patients is central in healthcare, and using different approaches is important.

What does this paper contribute to the wider global clinical community? 

• Patients with long-term conditions should be encouraged to share their knowledge to others, which can give support in managing their disease
• Group-learning sessions can add a perspective of patients' lived knowledge which is one of the key aspects concerning treatment of patients with long-term conditions

Background: Lipoedema is a chronic disease in adipose tissue that almost exclusively affects women during periods of hormonal alterations. Its main symptoms include an abnormal accumulation of subcutaneous fat in the buttock, hips, and legs, which is associated with pain, swelling, and easy bruising. Herein, a grading in three stages is used to determine disease progression. Problematically, lipoedema manifestations are often confused with lifestyle-induced obesity, which is why the various health problems among affected women often remain unrecognized. Overall, research on lipoedema is scarce. As such, this study examined the health, health-related quality of life (HRQOL), and sense of coherence (SOC) among women with lipoedema. Methods: We conducted a national cross-sectional study using an online survey assessing sociodemographic data, lipoedema characteristics, symptom severity, comorbidities, HRQOL (RAND-36), and SOC (SOC-13). In total, 245 women with lipoedema, recruited from all Lipoedema Association groups in Sweden, participated. Data were compiled with descriptive statistics, and mean differences between groups were analysed by using parametric and non-parametric tests. Results: Moderate and severe leg heaviness, pain, numbness, cold skin, feeling cold, easy bruising, and sleep problems were found to occur in all lipoedema stages. Moreover, almost all participants reported having comorbidities. Worse physical health and most substantial limitations in daily life were reported among women with the most progressive lipoedema (i.e., stage 3). Social and emotional functioning and SOC were found to be, on the other hand, primarily related to respondents’ sociodemographic data and their ages at lipoedema onset. Even though approximately 70% of the women had experienced lipoedema onset before age 30, only three (1.6%) had been diagnosed by a healthcare professional before that age. Conclusion: Having lipoedema is associated with several health problems and a lower HRQOL. In addition, the extent of delay in diagnosis within this sample indicates that many women with lipoedema are often underdiagnosed and are left without support from healthcare. These findings call for the need for greater attention on lipoedema. Moreover, further studies on how women with lipoedema manage their health and symptoms, as well as on their experiences of healthcare services and lipoedema treatments, are needed.

Aim: To describe how the nurse anaesthetist empowers the patient in the perioperative dialogue. Design: A qualitative descriptive design with interviews with 12 nurse anaesthetist (NA). Method: A hermeneutic text interpretation with a foundation in Gibson's empowerment model. Result: The results highlight Gibson's nursing domain: Helper, Supporter, Counsellor, Educator, Resource Consultant, Resource Mobilizer, Facilitator, Enabler and Advocate. The overall understanding is revealed as a relationship can be built through closeness between the patient and the NA. The NA helps the patient master the situation by talking to and touching the patient. The patient is helped to find their own strengths and to cope with their fears. The patients decide over their own bodies. When the patients do not want to or cope with protecting themselves, the NA protects and represents the patient.

The extant literature has suggested relationships between an individual's chronotype (in relation to morningness/eveningness) and several outcomes, including addictive disorders, psychological distress and daytime sleepiness. Moreover, sleep quality has been proposed to be a mediator in the aforementioned relationships. Consequently, the aim of the present study was to investigate the complex relationship between morningness/eveningness, problematic social media use, psychological distress and daytime sleepiness, with the potential mediators of sleep quality and insomnia. All participants (N = 1,791 [30.1% males]; mean age = 27.2 years, SD = 10.1) completed a battery of psychometric scales, including a reduced version of the Morningness-Eveningness Questionnaire (at baseline), the Pittsburgh Sleep Quality Index and Insomnia Severity Index (1 month after baseline assessment), the Bergen Social Media Addiction Scale, the Hospital Anxiety and Depression Scale, and the Epworth Sleepiness Scale (2 months after baseline assessment). The impacts of morningness-eveningness on problematic social media use, anxiety, depression and daytime sleepiness were found in the mediation models. Furthermore, the mediated effects of insomnia and sleep quality were observed. The present study's results emphasize the importance of promoting healthy sleep habits and sleep hygiene behaviours, and that of early detection of sleep problems among individuals who have the eveningness chronotype, because this would significantly improve their health outcomes.

Objective: Health education programs using group learning sessions for patients with long-term conditions have been tested, but not evaluated. In order to evaluate such sessions, the purpose was to explore experiences from patients with long-term conditions after participating in group learning sessions.

Methods: A descriptive design based on qualitative content analysis was used. Interviews were conducted with 19 patients with different long-term conditions, and participants were asked about their experiences after taking part in the group learning sessions.

Results: Sharing experiences with one another gave them opportunities for learning. Patients described a metaphorical "expanded window," which opens in the group learning sessions; comparable to encounters during regular visits to health care providers. The nature of the learning environment that follows the educational model, together with describing lived experiences, allowed patients to share capability and resources, which was found to be foundational.

Conclusions: The health education program as a format was important for shared learning. The facilitator can support the learning by structuring the format, but most essential was sharing experiences that facilitated each patient's learning that can aid the support of individual self-management.

Purpose: Insomnia has adverse effects on people with epilepsy. We aimed to test a novel cognitive behavioral therapy for insomnia (CBT-I) app-based intervention on insomnia symptoms and social psychological factors in people with epilepsy and to examine the possible mechanisms among the factors.

Methods: Participants were recruited from neurology clinics in Iran and comprised individuals diagnosed with epilepsy and having moderate to severe insomnia. A two-arm randomized controlled trial design was used, consisting of a treatment group (CBT-I; n = 160) and control group (patient education; n = 160). Primary outcomes were self-reported sleep quality, insomnia severity, and sleep hygiene behavior and objective sleep characteristics measured by actigraphy. Secondary outcomes were attitude, perceived behavioral control, intention, action planning, coping planning, behavioral automaticity, self-monitoring, anxiety, depression, and quality of life (QoL). All outcomes were measured at baseline, and at one, three, and six months postintervention, except objective sleep, which was assessed at baseline, and one and six months postintervention. Data were analyzed using linear mixed models.

Results: Current findings showed that sleep quality, insomnia severity, sleep hygiene behavior, and sleep onset latency were significantly improved in the CBT-I group compared with the patient education group at all measurement points. Also, the CBT-I group had significantly improved anxiety, depression, and QoL compared with the patient education group. Mediation analyses showed that attitude, intention, coping planning, self-monitoring, and behavioral automaticity significantly mediated the effect of the intervention on sleep outcomes.

Conclusion: Results support the use of the CBT-I app to improve sleep outcomes among people with epilepsy.

Background In the perioperative dialogue, pre-, intra- and postoperatively, the patient shares their history. In the dialogue, the nurse anesthetist (NA) gets to witness the patient's experiences and can alleviate the patients' suffering while waiting for, or undergoing surgery. The aim of this study was to describe the nurse anesthetist's experiences of the perioperative dialogue. Methods The study had a qualitative design. Interviews were conducted with 12 NA and analyzed with interpretive content analysis. The methods were conducted in accordance with the COREQ guidelines. Results In the result, three categories emerge: A mutual meeting (the preoperative dialogue) where the patient and the NA through contact create a relationship. The NA is present and listens to the patient, to give the patient confidence in the NA. In the category, On the basis of the patient's needs and wishes (the intraoperative dialogue), the body language of the NA, as well as the ability to read the body language of the patient, is described as important. In the category, To create a safe situation (the postoperative dialogue) the NA ensures that the patient has knowledge of what has happened and of future care in order to restore the control to the patient. Conclusion The patient is met as a person with their own needs and wishes. It includes both a physical and a mental meeting. In a genuine relationship, the NA can confirm and unreservedly talk with the patient. When the patients leave their body and life in the hands of the NA, they can help the patients to find their inherent powers, which allows for participation in their care. Understanding the patient is possible when entering in a genuine relationship with the patient and confirm the patient. The perioperative dialogue forms a safety for the patients in the operating environment.