Perceptions about the sexuality of women with fibromyalgia syndrome: a phenomenological study

Aims: The aim of this study was to explore and understand the perceptions and experiences of women with fibromyalgia syndrome regarding their sexuality. Background: Fibromyalgia syndrome is a chronic pathology, which compromises a woman’s physical, mental and emotional health. Although concerns related to sexuality are commonly reported, research has tended to focus on the physical symptoms. Design: An interpretive qualitative research methodology using Gadamer’s philosophical hermeneutics was carried out. Methods: This qualitative study explores the sexuality of women with fibromyalgia syndrome. A focus group and semi-structured interviews were conducted with 13 women with fibromyalgia syndrome. Data were collected between April - June 2014. Participants were recruited until findings reached saturation. Findings: Three themes define the perception of sexuality for these women: (i) Physical impact: don’t touch, don’t look; (ii) Sexuality and identity: fighting against their loss; (iii) Impact on the relationship: sexuality as a way of connecting the couple. Conclusion: Despite limitations, sexuality is important for the identity and quality of life of women with fibromyalgia syndrome. Together with the physical symptomology, guilt, fear and a lack of understanding compromise the coping process. Women need the support of their partner, their socio-family environment and health professionals. Nurses can aid the successful adjustment to sexual problems related to fibromyalgia syndrome

Psychometric evaluation and cultural adaptation of the Spanish version of the “Scale for End-of Life Caregiving Appraisal”

Objective: To translate, culturally adapt and psychometrically evaluate the Spanish version of the ‘Scale for End-of Life Caregiving Appraisal’ (SEOLCAS). Methods: Observational cross-sectional study. Convenience sample of 201 informal end-of-life caregivers recruited in a southern Spanish hospital. The reliability of the questionnaire was assessed through its internal consistency (Cronbach’s α) and temporal stability (Pearson’s correlation coefficient (r) between test-retest). The content validity index of the items (I-CVI) and the scale (S-CVI/Ave) was calculated. Its criterion validity was explored through performing a linear regression analysis to evaluate the SEOLCAS’ predictive validity. Exploratory factor analysis was used to examine its construct validity. Results: The SEOLCAS’s reliability was very high (Cronbach’s α=0.92). Its content validity was excellent (all items’ content validity index=0.8–1; scale’s validity index=0.88). Evidence of the SEOLCAS’ criterion validity showed that the participants’ scores on the SEOLCAS explained approximately 79.3% of the between-subject variation of their results on the Zarit Burden Interview. Exploratory factor analysis provided evidence of the SEOLCAS’ construct validity. This analysis revealed that two factors (‘internal contingencies’ and ‘external contingencies’) explained 53.77% of the total variance found and reflected the stoic Hispanic attitude towards adversity. Significance of the results: The Spanish version of the ‘Scale for End-of Life Caregiving Appraisal’ has shown to be an easily-applicable, valid, reliable and culturally-appropriate tool to measure the impact of end-of-life care provision on Hispanic informal caregivers. This tool offers healthcare professionals the opportunity to easily explore Hispanic informal end-of-life caregivers’ experiences and discover the type of support they may need (instrumental or emotional) even when there are communicational and organisational constraints

Social support for female sexual dysfunction in fibromyalgia

The aim of this study is to describe and understand experiences related to social support for women with fibromyalgia who suffer from sexual dysfunction. An interpretive qualitative research methodology based on Gadamer’s philosophical hermeneutics was used. Data collection included a focus group and in-depth interviews with 13 women who averaged 44.8 years of age and 14.3 years since being diagnosed with fibromyalgia. Data were analyzed using Fleming’s method and two themes were identified: “searching for understanding in socio-family support” and “lack of formal support regarding fibromyalgia patient’s sexuality.” The partner constitutes the main support for women with fibromyalgia. Although they can find understanding and social support in patient associations, they lack formal support from health care professionals. Women demand trusted and expert professionals, like sexologists and nurses, to carry out a multidisciplinary approach to tackle sexual dysfunction associated with fibromyalgia