دورية أكاديمية
Growing up with juvenile vulvar lichen sclerosus, the experiences and care needs of adult women with lichen sclerosus since childhood: a qualitative exploration.
| العنوان: | Growing up with juvenile vulvar lichen sclerosus, the experiences and care needs of adult women with lichen sclerosus since childhood: a qualitative exploration. |
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| المؤلفون: | Morrel B; Department of Obstetrics and Gynecology, Erasmus MC University Medical Center Rotterdam, The Netherlands.; Department of Dermatology, Erasmus MC University Medical Center Rotterdam, The Netherlands., Kampherbeek JHJ; Department of Dermatology, Erasmus MC University Medical Center Rotterdam, The Netherlands., Ten Kate-Booij MJ; Department of Obstetrics and Gynecology, Erasmus MC University Medical Center Rotterdam, The Netherlands., van der Avoort IAM; Department of Obstetrics and Gynecology, Ikazia Hospital, Rotterdam, The Netherlands., van Hees CLM; Department of Dermatology, Erasmus MC University Medical Center Rotterdam, The Netherlands., Wigny KMGJ; Department of Dermatology, Erasmus MC University Medical Center Rotterdam, The Netherlands., Burger CW; Research and Development Office (RDO), Erasmus MC University Medical Center Rotterdam, The Netherlands., Pasmans SGMA; Department of Dermatology, Erasmus MC University Medical Center Rotterdam, The Netherlands.; Department of Dermatology and Sophia Children's Hospital-Center of Pediatric Dermatology, Erasmus MC University Medical Center Rotterdam-Sophia Children's Hospital, Rotterdam, The Netherlands., Lugtenberg M; Department of Dermatology, Erasmus MC University Medical Center Rotterdam, The Netherlands.; Department Tranzo, Tilburg School of Social and Behavioural Sciences, Tilburg University, Tilburg, The Netherlands. |
| المصدر: | The British journal of dermatology [Br J Dermatol] 2024 May 21. Date of Electronic Publication: 2024 May 21. |
| Publication Model: | Ahead of Print |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: Oxford University Press Country of Publication: England NLM ID: 0004041 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1365-2133 (Electronic) Linking ISSN: 00070963 NLM ISO Abbreviation: Br J Dermatol Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: 2023- : Oxford : Oxford University Press Original Publication: Oxford [etc.] Published for the British Association of Dermatologists by Blackwell Scientific Publications [etc.] |
| مستخلص: | Background: Vulvar Lichen Sclerosus (VLS) is a chronic remitting condition affecting the genital skin of females of all ages. Although qualitative studies have been conducted focusing on women with VLS in mid-life or older, less is known about the experiences of individuals with VLS from childhood or adolescence onward. Objective: To gain understanding of the experiences of women with a history of juvenile VLS (JVLS) regarding the impact of the disease on their personal lives, and their experiences and needs regarding care and guidance. Methods: A qualitative study was conducted consisting of 27 in-depth face-to-face interviews with adult women with a histologically confirmed history of JVLS, striving for maximum variation and saturation. Interviews were audio-taped and transcribed verbatim. A thorough thematic content analysis was performed. Results: Three main themes were identified. I. Varying impact of living with JVLS: Women experienced diverse emotional and physical impact, from shame and denial to complete acceptance, from restrictions in daily functioning to no limitations. They felt hindered by their own lack of knowledge about JVLS, and generally expressed a positive influence of sharing their experiences with people close to them. II. Finding one's way in care and guidance: While navigating care and guidance, women often felt hindered by knowledge gaps among health care professionals (HCPs), lack of continuity in care and guidance, lack of life-stage adjusted and future-oriented information provision, inadequate guidance around life events, and insufficient monitoring of determinants of therapy adherence. III. Need for patient-tailored care: Patients stressed the need for age-appropriate and life-phase adjusted information, guidance around life-events and compassionate contact with knowledgeable HCPs, aware of the determinants of therapy adherence and influencing factors. Conclusions: Age-appropriate life-phase adjusted individually tailored care for women diagnosed with VLS in childhood or adolescence is needed. Care and guidance from childhood onward should encompass a standard of care adapted to the individual as needs change over time. This involves taking interpersonal differences into account, including differences in support network and coping strategies. These findings demonstrate the need for improving awareness and knowledge about (J)VLS among HCPs, especially primary care providers, and among the general public. (© The Author(s) 2024. Published by Oxford University Press on behalf of British Association of Dermatologists.) |
| تواريخ الأحداث: | Date Created: 20240520 Latest Revision: 20240520 |
| رمز التحديث: | 20240521 |
| DOI: | 10.1093/bjd/ljae203 |
| PMID: | 38769589 |
| قاعدة البيانات: | MEDLINE |
| تدمد: | 1365-2133 |
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| DOI: | 10.1093/bjd/ljae203 |