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Falck, J., Nygårdh, A., Rolander, B., Jonasson, L.-L. & Mårtensson, J. (2025). Dealing with lipoedema: women's experiences of healthcare, self-care, and treatments-a mixed-methods study. BMC Women's Health, 25(1), Article ID 171.
Open this publication in new window or tab >>Dealing with lipoedema: women's experiences of healthcare, self-care, and treatments-a mixed-methods study
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2025 (English)In: BMC Women's Health, E-ISSN 1472-6874, Vol. 25, no 1, article id 171Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2025
Keywords
Access and evaluation, Health, Health care quality, Lipoedema, Mixed-methods design, Patient experience, Self-care, Surveys and questionnaires, Treatments, Women´s health
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Nursing
Identifiers
urn:nbn:se:hj:diva-67576 (URN)10.1186/s12905-025-03707-1 (DOI)001465453300002 ()40217279 (PubMedID)2-s2.0-105003010652 (Scopus ID)GOA;;1012236 (Local ID)GOA;;1012236 (Archive number)GOA;;1012236 (OAI)
Available from: 2025-04-16 Created: 2025-04-16 Last updated: 2025-04-29Bibliographically approved
Falck, J., Herbst, K., Rolander, B., Nygårdh, A., Jonasson, L.-L. & Mårtensson, J. (2025). Health-related stigma, perceived social support, and their role in quality of life among women with lipedema. Health Care for Women International
Open this publication in new window or tab >>Health-related stigma, perceived social support, and their role in quality of life among women with lipedema
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2025 (English)In: Health Care for Women International, ISSN 0739-9332, E-ISSN 1096-4665Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Place, publisher, year, edition, pages
Taylor & Francis, 2025
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Nursing
Identifiers
urn:nbn:se:hj:diva-67679 (URN)10.1080/07399332.2025.2499487 (DOI)001484018100001 ()40339162 (PubMedID)2-s2.0-105004440324 (Scopus ID)HOA;; (Local ID)HOA;; (Archive number)HOA;; (OAI)
Note

Included in doctoral thesis in manuscript form.

Available from: 2025-04-29 Created: 2025-04-29 Last updated: 2025-05-19
Lindqvist, G., Safipour, J., Rolander, B. & Knutsson, S. (2024). Nursing students' experiences of clinical practice at a clinical training centre during the Covid-19 pandemic. Nordisk sygeplejeforskning, 14(3), Article ID 2.
Open this publication in new window or tab >>Nursing students' experiences of clinical practice at a clinical training centre during the Covid-19 pandemic
2024 (English)In: Nordisk sygeplejeforskning, ISSN 1892-2678, E-ISSN 1892-2686, Vol. 14, no 3, article id 2Article in journal (Refereed) Published
Abstract [en]

Background: To stimulate the learning process for nursing students, theory and practice need to be integrated by means of practice at a clinical training centre (CTC). The Covid-19 pandemic was a challenge in relation to this. The aim of this study was to describe and compare the experiences of clinical practice at the CTC among nursing students during the Covid-19 pandemic. Methods: It is a crosssectional study using both quantitative and qualitative design. Data were analysed using both descriptive statistics and qualitative analysis. Results: Due to the pandemic restrictions and distance education the students reported frustration over the lack of materials and 15.1% of the students reported poor/very poor experience of clinical training. The results point out the importance of being able to link caring theory with nursing practice at the CTC, no matter the circumstances, and how unity among the teachers regarding what to learn, conditions and goals is vital.

Place, publisher, year, edition, pages
Scandinavian University Press, 2024
Keywords
covid-19 pandemic, nursing students, clinical practice, clinical training centre, quantitative and qualitative design
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-66186 (URN)10.18261/nsf.14.3.2 (DOI)001296564900002 ()
Available from: 2024-09-11 Created: 2024-09-11 Last updated: 2024-09-11Bibliographically approved
Helkimo, A. N., Rolander, B. & Koch, G. (2024). Oral health with focus on dental fear and dental caries in Swedish preschool child populations attending public dental health care: Trends over 30 years. International Journal of Dental Hygiene, 22(4), 833-839
Open this publication in new window or tab >>Oral health with focus on dental fear and dental caries in Swedish preschool child populations attending public dental health care: Trends over 30 years
2024 (English)In: International Journal of Dental Hygiene, ISSN 1601-5029, E-ISSN 1601-5037, Vol. 22, no 4, p. 833-839Article in journal (Refereed) Published
Abstract [en]

Objectives

To study changes in oral health with focus on reported dental fear prevalence and interrelationships between dental fear and prevalence of dental caries and performed restorative dental treatment in preschool child populations attending regular public dental health care between 1983 and 2013.

Methods

Every 10 years, random samples of about 100 children aged 3 and 5 years, respectively, took part in cross-sectional studies based on oral examination and a questionnaire. One question, put to the child and answered by the parent, mirrored dental fear: "What do you feel at the prospect of an appointment with a dentist?". Agreement to at least one of three alternatives, ill at ease, frightened and sick, indicated dental fear. Frightened and/or sick mirrored severe dental fear. 79%-94% of the samples answered the question and constituted the study group. Prevalence of caries and number of filled tooth surfaces were recorded. Dental parameters were presented in mean values.

Results

During the 30 years, dental fear prevalence was fairly constant. 21% of 3-year-olds and 15% of 5-year-olds reported dental fear in 2013. Positive relationships between dental fear prevalence and caries prevalence and number of filled tooth surfaces were found. Dental caries was reduced during the study time, but to a lesser degree in children with dental fear compared to children without dental fear.

Conclusions

Although children were offered public dental health care, the prevalence of dental fear remained high. Children with dental fear are caries risk individuals.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024
Keywords
dental caries, dental fear, dental restorative treatment, oral health, preschool children, public health dentistry
National Category
Dentistry
Identifiers
urn:nbn:se:hj:diva-63911 (URN)10.1111/idh.12798 (DOI)001185135400001 ()38487928 (PubMedID)2-s2.0-85188336545 (Scopus ID)HOA;;944340 (Local ID)HOA;;944340 (Archive number)HOA;;944340 (OAI)
Funder
Futurum - Academy for Health and Care, Jönköping County Council, Sweden, 932885, 939972
Available from: 2024-04-02 Created: 2024-04-02 Last updated: 2025-01-05Bibliographically approved
Koldestam, M., Rolander, B., Broström, A., Lindqvist, G. & Knutsson, S. (2024). Undergraduate nursing student's attitudes to learning during clinical practice in different semesters when using a conceptual learning model grounded in a caritative caring perspective: A cross-sectional study. Scandinavian Journal of Caring Sciences, 38(2), 294-305
Open this publication in new window or tab >>Undergraduate nursing student's attitudes to learning during clinical practice in different semesters when using a conceptual learning model grounded in a caritative caring perspective: A cross-sectional study
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2024 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 38, no 2, p. 294-305Article in journal (Refereed) Published
Abstract [en]

Aim: To describe undergraduate nursing students' attitudes to learning during clinical practice in different semesters when using the conceptual learning model, Model for Improvements in Learning Outcomes (MILO) grounded in a caritative caring perspective.

Background: With the intention to support interlinking between theory and praxis and offer understanding and structure to facilitate learning, MILO, theoretically grounded in hermeneutics and a caritative caring perspective based on ethical values, was implemented. MILO consists of four contextual concepts (peer learning, co-clinical teachers, student-centred and student-active supervision) and four intrapersonal concepts (nursing, a reflective approach, a critical approach, quality and safety).

Methods: A descriptive comparative quantitative study design was applied at a Swedish university, 3 hospitals and 13 municipalities in one county. Cross-sectional data collected via a questionnaire developed to assess attitudes to learning related to MILO's contextual and intrapersonal concepts and their applications were used.

Results: 209 students in semester 3, 4 and 6 participated in 6 different clinical practice courses. In comparison, intrapersonal concepts, that is, the student's own characteristics and abilities were viewed to be of greater value for learning than contextual, that is, organisational-related concepts in all semesters. Understanding the needs of others and reflective learning were rated to be of major importance. Students in semester 3 valued the use of the applications the highest. To be supervised in pairs was rated the lowest in semester 6. Some of the concepts and their applications were to great extent not applied.

Conclusions: In all semesters, fundamentals in caritative caring and characteristics and abilities related to the individual student were rated to be of greater importance for learning than environmental support. Providing students opportunities to develop independency seems essential. Use of a learning model such as MILO is dependent on a bearing of a caritative caring culture and a shared understanding between all involved in student learning during clinical practice.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024
Keywords
attitudes, caring culture, caritas, clinical practice, concepts, implementation, learning, learning models, questionnaire
National Category
Educational Sciences Nursing
Identifiers
urn:nbn:se:hj:diva-63038 (URN)10.1111/scs.13229 (DOI)001111904700001 ()38041229 (PubMedID)2-s2.0-85178389357 (Scopus ID)HOA;;920243 (Local ID)HOA;;920243 (Archive number)HOA;;920243 (OAI)
Funder
Futurum - Academy for Health and Care, Jönköping County Council, Sweden, 859991/964201/974852
Available from: 2023-12-12 Created: 2023-12-12 Last updated: 2025-02-18Bibliographically approved
Seidel, P., Rolander, B., Eriksson, A. L., Lindahl, U., Wallerstedt, S. M., Hägg, S. & Kling, A. (2023). Drug information sources in professional work: a questionnaire study on physicians’ usage and preferences (the drug information study). European Journal of Clinical Pharmacology, 79, 767-774
Open this publication in new window or tab >>Drug information sources in professional work: a questionnaire study on physicians’ usage and preferences (the drug information study)
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2023 (English)In: European Journal of Clinical Pharmacology, ISSN 0031-6970, E-ISSN 1432-1041, Vol. 79, p. 767-774Article in journal (Refereed) Published
Abstract [en]

Purpose: This study aimed to explore physicians’ use of drug information in professional work, with special focus on those working in primary care, and also in relation to personal characteristics of physicians.

Methods: A web-based questionnaire was distributed by e-mail to physicians in five regions in Sweden. The questions concerned drug-related queries at issue when searching for information, sources used, and factors of importance for the choice of source, as well as responder characteristics.

Results: A total of 3254 (85%) out of 3814 responding physicians stated that they searched for drug information every week. For physicians working in primary health care, the corresponding number was 585 (96%). The most common drug-related issues searched for by 76% of physicians every week concerned pharmacotherapeutic aspects (e.g., dosing), followed by adverse drug reactions (63%). For 3349 (88%) physicians, credibility was the most important factor for the choice of sources of drug information, followed by easy access online (n = 3127, 82%). Further analyses among physicians in primary care showed that some personal characteristics, like seniority, sex, and country of education, as well as research experience, were associated with usage and preferences of drug information sources.

Conclusions: This study confirms that physicians often use drug information sources in professional work, in particular those who work in primary health care. Credibility and easy access are key factors for usage. Among physicians in primary care, personal factors influenced the choice of drug information sources.

Place, publisher, year, edition, pages
Springer, 2023
Keywords
Drug information, Information seeking behavior, Physicians, Primary health care
National Category
Pharmacology and Toxicology
Identifiers
urn:nbn:se:hj:diva-60229 (URN)10.1007/s00228-023-03494-4 (DOI)000968765700001 ()37059830 (PubMedID)2-s2.0-85152714682 (Scopus ID)HOA;;876658 (Local ID)HOA;;876658 (Archive number)HOA;;876658 (OAI)
Available from: 2023-04-24 Created: 2023-04-24 Last updated: 2023-09-04Bibliographically approved
Falck, J., Rolander, B., Nygårdh, A., Jonasson, L.-L. & Mårtensson, J. (2023). Experiences of healthcare and treatments in women with lipedema - results from a Swedish national survey. In: : . Paper presented at FDRS 2023 Conference, 14-16 April 2023, Atlanta, USA.
Open this publication in new window or tab >>Experiences of healthcare and treatments in women with lipedema - results from a Swedish national survey
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2023 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

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
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-60216 (URN)
Conference
FDRS 2023 Conference, 14-16 April 2023, Atlanta, USA
Available from: 2023-04-21 Created: 2023-04-21 Last updated: 2023-04-21Bibliographically approved
Haraldsson, P., Rolander, B., Jonker, D., Strengbom, E. & Areskoug Josefsson, K. (2023). Further psychometric evaluation of the Structured Multidisciplinary Work Evaluation Tool (SMET) questionnaire: Practical implications in healthcare settings. In: : . Paper presented at 2023 Learn at WORK Webinars, 15 February 2023.
Open this publication in new window or tab >>Further psychometric evaluation of the Structured Multidisciplinary Work Evaluation Tool (SMET) questionnaire: Practical implications in healthcare settings
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2023 (English)Conference paper, Oral presentation only (Refereed)
Keywords
Work environment, occupational health service, questionnaire, reliability, validity
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hj:diva-59913 (URN)
Conference
2023 Learn at WORK Webinars, 15 February 2023
Available from: 2023-02-24 Created: 2023-02-24 Last updated: 2023-02-24Bibliographically approved
Falck, J., Nygårdh, A., Rolander, B., Jonasson, L.-L. & Mårtensson, J. (2023). Healthcare experiences, health-related stigma, and social support among Swedish women with lipoedema – results from a national survey. In: : . Paper presented at Lipedema World Congress, 5-7 October 2023, Potsdam, Germany.
Open this publication in new window or tab >>Healthcare experiences, health-related stigma, and social support among Swedish women with lipoedema – results from a national survey
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2023 (English)Conference paper, Oral presentation only (Refereed)
Abstract [sv]

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. 

National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-62679 (URN)
Conference
Lipedema World Congress, 5-7 October 2023, Potsdam, Germany
Available from: 2023-10-17 Created: 2023-10-17 Last updated: 2023-10-20Bibliographically approved
Nydell Helkimo, A., Rolander, B. & Koch, G. (2022). Dental fear in school children and young adults attending public dental health care: prevalence and relationship to gender, oral disease and dental treatment; trends over 40 years. BMC Oral Health, 22(1), Article ID 146.
Open this publication in new window or tab >>Dental fear in school children and young adults attending public dental health care: prevalence and relationship to gender, oral disease and dental treatment; trends over 40 years
2022 (English)In: BMC Oral Health, E-ISSN 1472-6831, Vol. 22, no 1, article id 146Article in journal (Refereed) Published
Abstract [en]

Purpose: To study prevalence of dental fear and the relationship to gender, oral disease and dental treatment between 1973 and 2013 in school children and young adults attending public dental health care. Methods: Every ten years from 1973 to 2013 random samples of about 100 individuals in each of the age groups 10, 15 and 20 years took part in a repeated cross-sectional study based on clinical parameters and a questionnaire. Dental fear was estimated by the question: “What do you feel at the prospect of an appointment with a dentist?”. 75–99% of the samples answered the question. Agreement to at least one of the alternative answers: ill at ease, frightened and sick defined dental fear. Frightened and/or sick indicated severe dental fear. The prevalence of caries, gingivitis and number of filled tooth surfaces were calculated. Chi-square tests were used to show differences in proportions between groups and linear regression to show trends over time. Results: Prevalence of dental fear declined in all age groups over time. In the 20-year olds dental fear was found in 29% of the sample and severe dental fear in 12% of girls and 5% of boys in 2013. Individuals with dental fear had higher mean caries prevalence and number of filled tooth surfaces compared with individuals without dental fear. Conclusions: This 40-year time trend study showed a reduction in dental fear prevalence in school children and young adults offered regular public dental health care based on prevention and a psychological approach. The prevalence of dental fear was still high in 2013 despite a significant decline in caries during the study period. Further improvements in the psychological approach when treating children are thus needed.

Place, publisher, year, edition, pages
BioMed Central, 2022
Keywords
Dental fear, Dental treatment, Oral health, Public dental health care, School children, Young adults
National Category
Dentistry
Identifiers
urn:nbn:se:hj:diva-56432 (URN)10.1186/s12903-022-02166-6 (DOI)000788390700008 ()35473601 (PubMedID)2-s2.0-85128875674 (Scopus ID)GOA;;811364 (Local ID)GOA;;811364 (Archive number)GOA;;811364 (OAI)
Funder
Futurum - Academy for Health and Care, Jönköping County Council, Sweden
Available from: 2022-05-10 Created: 2022-05-10 Last updated: 2024-07-04Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-6804-9490

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