Change search
Link to record
Permanent link

Direct link
Jonasson, Lise-LotteORCID iD iconorcid.org/0000-0002-0848-6098
Publications (10 of 45) Show all publications
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
Show others...
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., Mårtensson, J., Jonasson, L.-L., Dudek, J. & Nygårdh, A. (2025). Experiences of Sexual Health and Intimate Relationships in Women With Lipedema: A Qualitative Study. Journal of Advanced Nursing
Open this publication in new window or tab >>Experiences of Sexual Health and Intimate Relationships in Women With Lipedema: A Qualitative Study
Show others...
2025 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Place, publisher, year, edition, pages
John Wiley & Sons, 2025
Keywords
chronic disease, intimacy, lipedema, nursing, qualitative research, sexual health, stigma, women's health
National Category
Public Health, Global Health and Social Medicine Psychology
Identifiers
urn:nbn:se:hj:diva-67510 (URN)10.1111/jan.16933 (DOI)001452568000001 ()40135932 (PubMedID)2-s2.0-105001583544 (Scopus ID)HOA;intsam;1010050 (Local ID)HOA;intsam;1010050 (Archive number)HOA;intsam;1010050 (OAI)
Available from: 2025-04-07 Created: 2025-04-07 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
Show others...
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
Odzakovic, E., Eliasson, A., Jansson, P., Lagerqwist, M., Fridlund, B., Jonasson, L.-L., . . . Broström, A. (2025). Prerequisites for self-care actions in individuals with restless legs syndrome-A deductive qualitative analysis based on the COM-B model. Journal of Health Psychology, Article ID 13591053251315379.
Open this publication in new window or tab >>Prerequisites for self-care actions in individuals with restless legs syndrome-A deductive qualitative analysis based on the COM-B model
Show others...
2025 (English)In: Journal of Health Psychology, ISSN 1359-1053, E-ISSN 1461-7277, article id 13591053251315379Article in journal (Refereed) Epub ahead of print
Abstract [en]

Restless Legs Syndrome (RLS) affects 3% of the world's population, causing tingling sensations primarily in the legs. Incorporating self-care activities could improve the management of RLS symptoms, yet knowledge about effective self-care actions is limited. This study employs the Capability, Opportunity, and Motivation-Behaviour (COM-B) model to explore self-care behaviours in individuals with RLS, as research in this area is sparse. Qualitative content analysis of interviews with 28 participants with RLS, 26 subcategories emerged, aligning with the COM-B model's components. The first part, Capability, highlighted the importance of being able to be in motion, while the second, Opportunity referred to situations where there was a lack of trust and guidance for self-care. The third part, Motivation, emphasised the importance of fixed routines of sleep, rest, and activity. These identified prerequisites can inform the development of screening instruments and patient-reported outcome measures to evaluate self-care needs and interventions for individuals with RLS.

Place, publisher, year, edition, pages
Sage Publications, 2025
Keywords
COM-B, behaviour, capability, counselling, motivation, opportunity, qualitative content analysis, restless legs syndrome, self-care, sleep
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-67223 (URN)10.1177/13591053251315379 (DOI)001410156300001 ()39888005 (PubMedID)2-s2.0-85216799706 (Scopus ID)HOA;;998099 (Local ID)HOA;;998099 (Archive number)HOA;;998099 (OAI)
Funder
The Kamprad Family Foundation, 20223144Medical Research Council of Southeast Sweden (FORSS), FORSS-969214
Available from: 2025-02-04 Created: 2025-02-04 Last updated: 2025-02-17
Lillsjö, E., Willman, A., Jonasson, L.-L. & Josefsson, K. (2025). Registered nurses' perceptions of their leadership close to older adults in municipal home healthcare: a cross-sectional questionnaire study. BMC nursing, 24(1), Article ID 554.
Open this publication in new window or tab >>Registered nurses' perceptions of their leadership close to older adults in municipal home healthcare: a cross-sectional questionnaire study
2025 (English)In: BMC nursing, ISSN 1472-6955, Vol. 24, no 1, article id 554Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Registered nurses lead the nursing care close to older adults in home healthcare. It is expected that there will be an increased need for home healthcare. In addition, more advanced care is now being performed in home healthcare, leading to increased demands for registered nurses. Therefore, the aims of this study are to explore and compare registered nurses' perceptions of their leadership close to older adults in municipal home healthcare, as well as to correlate their perceptions with age and work experience.

METHODS: This study is a part of a larger web-based questionnaire survey, with a non-experimental and cross-sectional design. Descriptive and analytical statistics were used. A total of n = 71 registered nurses leading close to older adults participated, in seven municipalities in two geographic areas in Sweden.

RESULTS: The registered nurses perceived their ability as leaders close to older adults as high. The registered nurses had neither low or high trust in care staff's competence. They perceived to have space and access neither in a low or high degree in their work to develop sufficient competence in leadership and having nursing responsibility on an organisational level. Registered nurses' perceptions of their leadership differed depending on whether they had a specialist education or not; those with specialist education perceived to a higher degree that they could apply their professional experience in their work; interact with the older adult and their next of kin; assess individual needs and based on a holistic view of the older adult, create good relationships with the older adults' next of kin.

CONCLUSIONS: Registered nurses' specialist education may strengthen their leadership in home healthcare. Further research is needed to gain new knowledge of registered nurses' leadership in home healthcare, as well as care staff's' experiences of registered nurses' leadership in municipal home healthcare.

Keywords
Leadership, Municipal home healthcare, Older adult, Questionnaire, Registered nurse, Specialist education
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hj:diva-67776 (URN)10.1186/s12912-025-03210-w (DOI)001489963700001 ()40382568 (PubMedID)2-s2.0-105005453775 (Scopus ID)GOA;;67776 (Local ID)GOA;;67776 (Archive number)GOA;;67776 (OAI)
Funder
Karlstad University
Available from: 2025-05-19 Created: 2025-05-19 Last updated: 2025-05-26Bibliographically approved
Jakobsson, M., Elgan, E., Qvist, M. & Jonasson, L.-L. (2025). School nurses' experiences meeting children who live in a culture of honor: A qualitative interview study. Journal of School Nursing, Article ID 10598405251327736.
Open this publication in new window or tab >>School nurses' experiences meeting children who live in a culture of honor: A qualitative interview study
2025 (English)In: Journal of School Nursing, ISSN 1059-8405, E-ISSN 1546-8364, article id 10598405251327736Article in journal (Refereed) Epub ahead of print
Abstract [en]

The school nurse's work is to support children's health and identify those at risk of being maltreated, a situation that children living in a culture of honor may face. The aim was to describe the school nurse's experience of meeting children living in a culture of honor. The study was qualitative, using qualitative content analysis with an inductive approach. The data was collected through semistructured interviews with 10 school nurses from different parts of Sweden. The results are illustrated in an overarching theme: walking a tightrope when supporting children living in a culture of honor, and three categories. The categories are: working preventively around children, building trust in children, and collaborating around the children. Based on the study, school nurses desire regular training on the culture of honor and greater collaboration with other professional groups, especially social services, to feel more confident in their work.

Place, publisher, year, edition, pages
Sage Publications, 2025
Keywords
child health, culture of honor, qualitative content analysis, school nurse
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-67501 (URN)10.1177/10598405251327736 (DOI)001455675800001 ()40152628 (PubMedID)2-s2.0-105001930262 (Scopus ID)HOA;;1009836 (Local ID)HOA;;1009836 (Archive number)HOA;;1009836 (OAI)
Available from: 2025-04-03 Created: 2025-04-03 Last updated: 2025-04-16
Johansson, H., Berg, K., Jonasson, L.-L. & Berterö, C. (2024). Chronic obstructive pulmonary diseasés impact on the affected person and next of kin: A mixed methods study. Chronic Illness, 20(2), 296-308
Open this publication in new window or tab >>Chronic obstructive pulmonary diseasés impact on the affected person and next of kin: A mixed methods study
2024 (English)In: Chronic Illness, ISSN 1742-3953, E-ISSN 1745-9206, Vol. 20, no 2, p. 296-308Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: Severe chronic obstructive pulmonary disease affects and changes the lives of both affected persons and next of kin. There is a need for support and a sense of coherence to manage the life situation and minimize the symptom and caregiver burden. The aim of this study was to diverge or converge views of symptom burden, caregiver burden, the need for support, and sense of coherence in persons with chronic obstructive pulmonary disease and their next of kin to gain a deeper and broader knowledge and understanding.

METHODS: A mixed methods study with data from interviews and four validated questionnaires from persons affected by chronic obstructive pulmonary disease in GOLD stages III and IV and their next of kin.

RESULTS: Questionnaires from 112 persons affected by chronic obstructive pulmonary disease, and 71 next of kin, together with 25 and 21 interviews, show that; there is a difference between estimated symptoms and caregiver burden and experiences expressed in their own words. There is also a defect regarding meaningfulness, comprehensibility, and manageability affecting daily life. Symptoms and caregiver burden, together with the sense of coherence, strengthen the need for support.

DISCUSSION: The complexity of the life situation leads to a need for supportive interventions to strengthen internal and external resources.

Place, publisher, year, edition, pages
Sage Publications, 2024
Keywords
caregiver burden, chronic obstructive pulmonary disease, sense of coherence, support, symptom burden
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-60358 (URN)10.1177/17423953231175971 (DOI)000999932800001 ()37192646 (PubMedID)2-s2.0-85159701619 (Scopus ID)HOA;;880610 (Local ID)HOA;;880610 (Archive number)HOA;;880610 (OAI)
Funder
Region Östergötland
Available from: 2023-05-17 Created: 2023-05-17 Last updated: 2024-06-03Bibliographically approved
Odzakovic, E., Allgurin, M., Jonasson, L.-L., Öberg, S., Fridlund, B., Ulander, M., . . . Broström, A. (2024). Experiences of facilitators and barriers for fulfilment of human needs when living with restless legs syndrome: a qualitative study. International Journal of Qualitative Studies on Health and Well-being, 19(1), Article ID 2348884.
Open this publication in new window or tab >>Experiences of facilitators and barriers for fulfilment of human needs when living with restless legs syndrome: a qualitative study
Show others...
2024 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 19, no 1, article id 2348884Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Restless Legs Syndrome (RLS) is a widespread condition that affects sleep leading to daytime sleepiness, depression, and reduced quality of life. This study aims to determine and describe how patients with RLS experience their everyday life, with a focus on facilitators and barriers related to Maslow's hierarchical theory of human needs.

METHOD: Semi-structured interviews were analysed with qualitative content analysis resulting in facilitators and barriers affecting the fulfilment of the five human needs.

RESULTS: Addressing RLS symptoms through medications and a quiet sleep environment fulfils psychological needs. Control over RLS symptoms, engagement in activities, trust in treatments, and social support meet safety and security needs. Social inclusion, close relationships, and meaningful interactions fulfil a sense of belongingness and love needs despite RLS. Competence in managing RLS, effective self-care strategies, confident communication, and trust-building support esteem needs. Finally, comprehensive understanding through person-centred interventions and coping fulfils the self-actualization needs in managing RLS.

CONCLUSION: Holistic and person-centred interventions, including facilitators for the fulfilment of physiological, psychological, and social needs could help healthcare professionals to provide holistic care.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Human needs, Willis Ekbom disease, Wittmaack Ekbom syndrome, patient-centred, qualitative content analysis, restless legs syndrome
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-64168 (URN)10.1080/17482631.2024.2348884 (DOI)001221821900001 ()38735061 (PubMedID)2-s2.0-85192906923 (Scopus ID)GOA;;950394 (Local ID)GOA;;950394 (Archive number)GOA;;950394 (OAI)
Funder
Medical Research Council of Southeast Sweden (FORSS), FORSS-969214The Kamprad Family Foundation, 20223144
Available from: 2024-05-13 Created: 2024-05-13 Last updated: 2024-05-23Bibliographically approved
Odzakovic, E., Eliasson, A., Lagerqwist, M., Jansson, P., Fridlund, B., Jonasson, L.-L., . . . Broström, A. (2024). "Exploring all options": Essential self-care practices for individuals with restless legs syndrome-A deductive qualitative analysis using the COM-B model. Journal of Sleep Research, 33(Supplement 1), 113-113
Open this publication in new window or tab >>"Exploring all options": Essential self-care practices for individuals with restless legs syndrome-A deductive qualitative analysis using the COM-B model
Show others...
2024 (English)In: Journal of Sleep Research, ISSN 0962-1105, E-ISSN 1365-2869, Vol. 33, no Supplement 1, p. 113-113Article in journal, Meeting abstract (Other academic) Published
Abstract [en]

Restless Legs Syndrome (RLS) is a prevalent sensory-motor disorder. Symptoms such as an urge to move the arms and legs, often associated with a severe impact on sleep can lead to reduced quality of life. Treatment for RLS contains pharmacological therapy, and/or non-pharmacological treatment. Self-care can both in patients with mild and severe symptoms be a valuable addition, but more evidence is needed to provide accurate recommendations. Studies exploring prerequisites for self-care could fill a significant knowledge gap. Understanding these aspects, as described by patients with RLS, could increase health care personnels' awareness of potential and beneficial self-care activities. The aim was to explore and describe thefundamental factors for patients with RLS to engage in self-care actions based on the COM-B model.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024
National Category
Neurology
Identifiers
urn:nbn:se:hj:diva-67275 (URN)001319389401224 ()
Available from: 2025-02-10 Created: 2025-02-10 Last updated: 2025-02-10Bibliographically approved
Odzakovic, E., Allgurin, M., Jonasson, L.-L., Öberg, S., Fridlund, B., Ulander, M., . . . Broström, A. (2024). I Guess I Should Go To Sleep: An exploratory study of how patients with restless legs syndrome experience their life situation. Journal of Sleep Research, 33(Supplement 1), 96-97
Open this publication in new window or tab >>I Guess I Should Go To Sleep: An exploratory study of how patients with restless legs syndrome experience their life situation
Show others...
2024 (English)In: Journal of Sleep Research, ISSN 0962-1105, E-ISSN 1365-2869, Vol. 33, no Supplement 1, p. 96-97Article in journal, Meeting abstract (Other academic) Published
Abstract [en]

Restless legs syndrome (RLS) is a highly prevalent sensory-motor disorder, impacting approximately 3% of the global population, with a circadian rhythm profile, characterised by an96 of 633 ABSTRACTSurge to move the arms and legs, usually associated with discom-fort, pain, and motor restlessness. The diagnosis is commonly made in primary care, but the variation and fluctuation in symptoms, signs, and symptom burden, also when treatment is initiated, make RLS a difficult condition to diagnose and treat. When describing clinical symptoms, existing literature has mostly focused on a bio-medical perspective even if RLS impacts several human needs. Only a few qualitative studies have tried to gain an in-depth perspective of how symptoms are featured and expressed. Understanding factors affecting the fulfilment of human needs among patients with RLS could be beneficial in a clinical context. Therefore, the aim of this study was to explore and describe how patients with RLS experience their life situation.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024
National Category
Neurology
Identifiers
urn:nbn:se:hj:diva-67273 (URN)001319389401192 ()
Available from: 2025-02-10 Created: 2025-02-10 Last updated: 2025-02-10Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-0848-6098

Search in DiVA

Show all publications