Sexual Life of Women with Multiple Sclerosis: A Qualitative Study

Yılmaz, Sema Dereli; Gümüş, Haluk; Odabaş, Faruk Ömer; Akkurt, Halil Ekrem; Yılmaz, Halim

doi:10.1080/19317611.2016.1259705

Cited by 11 publications

(8 citation statements)

References 22 publications

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“…45 MS also has a significant impact on the sexual life of women. 46 Most researchers 6,25e30 showed the mere fact of sexual disorders without, however, assessing their impact on QOL of female patients.…”

Section: Discussionmentioning

confidence: 99%

The Association Between Sexual Disorders and the Quality of Life of Woman Patients With Multiple Sclerosis: Findings of a Prospective, Observational, and Cross-Sectional Survey

et al. 2020

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Introduction: Multiple sclerosis (MS) is a progressive, chronic inflammatory demyelinating disease of the central nervous system, whose symptoms include sexual disorders. Sexual dysfunctions can influence on quality of life (QOL) of patients with MS. Aim: To evaluate the occurrence of sexual disorders among women with MS and correlations between QOL, prevalence of sexual disorders, and level of sexual satisfaction. Methods: Polish women (n ¼ 101) aged 22e66 years with diagnosed MS were included in the study. Main Outcome Measures:The Female Sexual Function Index, the Sexual Satisfaction Questionnaire, the Satisfaction with Life Scale, and the Multiple Sclerosis International Quality of Life Questionnaire were used. In addition, an Authors-Designed Questionnaire was used to collect sociodemographic data. Results: More than half of the patients surveyed were totally or somewhat unsatisfied with their sex life, and 44.55% of the patients were diagnosed with significant sexual disorders. It was shown that patients with diagnosed sexual disorders and a low level of sexual satisfaction rated their QOL the lowest among all the surveyed patients. Conclusion: Our findings indicate that sexual disorders and the level of sexual satisfaction correlate significantly with QOL in patients with MS. Sexual dysfunctions are a significant problem in women with MS; thus, they should be considered with comprehensive care. Kołtuniuk A, Przestrzelska M, Karnas A, et al. The Association Between Sexual Disorders and the Quality of Life of Woman Patients With Multiple Sclerosis:

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Section: Discussionmentioning

confidence: 99%

The Association Between Sexual Disorders and the Quality of Life of Woman Patients With Multiple Sclerosis: Findings of a Prospective, Observational, and Cross-Sectional Survey

et al. 2020

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“…15,41 In a study of the exclusive use of alternative medicine by people with MS, interviewees described the lack of certainty regarding the impact and longterm effects of conventional medicines as a deterrent to their use, leading to the adoption of alternative modes of therapy, which were represented as delivering more certainty of outcome. 19 At the same time, uncertainty surrounding clinical course, and prognostication, appeared to provide respite from a fearful future, or be a source of hope for some. 32,37…”

Section: Uncertain Trajectories and A Need To Planmentioning

confidence: 99%

“…• Lack of personally tailored and specific information from health-care providers (generic advice/knowledge) 11,31,37,40,[42][43][44][45][46] • Unknown/uncertain impacts from treatments and interventions 15,19,39 • Lack of referral to support services (including lifestyle and psychological interventions) 34,35,40,42,43,55 • Receiving advice on diet and physical activity that was not clear or relevant 39,49 • Variable information related to having children -from supportive to discouraging 11,12 • Clinicians' focus (eg pharmacological/focus on one body system) 33,35,36,43,48,52 • Clinicians' communication style and lack of time and opportunity to discuss prognosis 37,48 • Alternative paths of self-directed research using resources such as the internet, 11,20,33,37,[54][55][56][57] books, 11,20,33,37,56 peer group support networks, 11,…”

Section: Ta B L E 1 (Continued)mentioning

confidence: 99%

“…Perhaps because of the heterogeneity of disease experiences of MS, the literature has tended to atomize, rather than synthesize these experiences. Qualitative studies have focused on the experiences of people with MS at particular points in time (eg diagnosis, early stage and relapse), 9,10 in specific populations (eg women and mothers), [11][12][13][14] in relation to specific assessments or interventions (eg rehabilitation, physical activity, disease-modifying therapies or alternative therapies), [15][16][17][18][19] or of specific symptoms or consequences (eg fatigue or sexual dysfunction). [20][21][22] The purpose of this review was to: (a) conduct a systematic search of the published qualitative literature on the experiences of people with MS; (b) synthesize the results to elucidate the common impacts of MS on people's lives; and (c) discuss these experiences in relation to clinical practice and research.…”

Section: Introductionmentioning

confidence: 99%

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‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Desborough

Brunoro

Parkinson

et al. 2020

Health Expectations

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Background People with multiple sclerosis (MS) have varied experiences and approaches to self‐management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research. Methods A meta‐synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge‐users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease. Results Of 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health‐care sector; and work, social and family life). Conclusion The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.

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“…Dve pacientki sta poročali tudi o urinski inkontinenci med spolnim odnosom. Pacientke so izpostavile dejstvo, da se v zakonskem življenju počutijo nesposobne kot ženske (Yilmaz, et al, 2017).…”

Section: Rezultatiunclassified

Spolna disfunkcija pri slovenskih pacientih z multiplo sklerozo

2020

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Uvod: Spolna disfunkcija je pri pacientih z multiplo sklerozo pogosta, ustreznih podatkov za slovensko populacijo pa ni na voljo. Namen raziskave je bil ugotoviti vrsto in delež spolne disfunkcije, razlike med moškimi in ženskami ter morebitno povezavo med spolno disfunkcijo in značilnostmi pacientov.Metode: Presečna raziskava je bila izvedena pri pacientih z multiplo sklerozo, ki so imeli spolne odnose v zadnjih šestih mesecih in so izpolnili vprašalnik MSISQ-19 (Multiple Sclerosis Intimacy and Sexuality Questionnaire). V raziskavi je sodelovalo 368 pacientov povprečne starosti 40,9 leta in trajanjem bolezni 10,2 leta. Nevrološko prizadetost smo ocenili z EDDS (Expanded Disability Status Scale). Za primerjavo številčnih spremenljivk smo uporabili neparni t-test, za primerjavo kategoričnih spremenljivk hi-kvadrat,povezanost med značilnostmi pacientov ter posamezno obliko spolne disfunkcije pa smo ocenili s pomočjo korelacijskega koeficienta po Spearmanu.Rezultati: Delež spolne disfunkcije, definiran kot odgovor 4 ali 5 na katero koli vprašanje v MSISQ-19, je znašal 37 %, deleži primarne, sekundarne in terciarne spolne disfunkcije pa 39,4 %, 39,9 % in 40,8 %. Med spoloma ni bilo statistično pomembnih razlik. Statistično značilno, a zelo šibko linearno korelacijo smo ugotovili med značilnostmi pacientov (starost, trajanje bolezni, EDSS, trajanje partnerske zveze) ter posamezno obliko spolne disfunkcije.Diskusija in zaključek: Spolno disfunkcijo ima 37 % slovenskih pacientov z multiplo sklerozo. Med spoloma ni statistično pomembnih razlik, kar velja tudi za posamezne vrste spolne disfunkcije, kot so primarna, sekundarna in terciarna.

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Sexual Life of Women with Multiple Sclerosis: A Qualitative Study

Cited by 11 publications

References 22 publications

The Association Between Sexual Disorders and the Quality of Life of Woman Patients With Multiple Sclerosis: Findings of a Prospective, Observational, and Cross-Sectional Survey

The Association Between Sexual Disorders and the Quality of Life of Woman Patients With Multiple Sclerosis: Findings of a Prospective, Observational, and Cross-Sectional Survey

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Spolna disfunkcija pri slovenskih pacientih z multiplo sklerozo

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