RESUMEN
BACKGROUND: Previous quantitative studies have shown a reduced quality of life in patients treated for craniopharyngioma (CP). However, few have assessed their sexual quality of life and other issues related to patient intimacy have not yet been addressed. Standardized questionnaires limit the approach to sexuality and the exploration of patient experiences. A qualitative study, which allows in-depth analysis, may represent an interesting approach to explore intimacy in women with a history of CP. OBJECTIVE: To assess the impact of a CP history on femininity and relationships in women. DESIGN AND PATIENTS: A qualitative study with semi-structured interviews was conducted with 15 adult women treated for CP during childhood, adolescence or at childbearing age up to 40 years of age. Interviews were audio recorded, anonymized and transcribed literally. Data analysis was carried out with an inductive approach according to the grounded theory method. RESULTS: Three main themes were identified: (a) apparent changes leading to altered self-perception that may impact on femininity and generate lower self-esteem; (b) managing the hidden disabilities of the disease inducing a need for permanent control; and (c) building parenthood and couple relationships: coping with sexual dysfunction and infertility. CONCLUSIONS: Our study highlighted alterations in self-perception and femininity due to body change and disability resulting from CP treatment, impacting both couple and social relationships. Interviewing women who underwent CP surgery at different ages highlighted specific needs and different expectations of medical professionals which emphasize the importance of offering both global and personalized care.
Asunto(s)
Craneofaringioma , Neoplasias Hipofisarias , Adolescente , Adulto , Femenino , Feminidad , Humanos , Percepción , Calidad de VidaRESUMEN
OBJECTIVES: To highlight the self-reported experiences and disease perceptions of infertile women with polycystic ovary syndrome (PCOS). METHODS: A qualitative study using an inductive method was conducted on infertile women with PCOS who shared their self-reported experiences on French-speaking on-line forums. RESULTS: 785 comments by 211 women on 7 forums were analyzed. Women complained of late diagnosis and lack of information regarding PCOS. PCOS and infertility showed negative psychological impact on daily life. This impact appeared to be alleviated by the sharing of knowledge and experience enabled by these forums. CONCLUSION: The self-reported experience of infertile women with PCOS is interesting for health practitioners. The psychological impact of PCOS and perceptions of illness appear to be improved by sharing experiences between women with PCOS, suggesting a beneficial support role of online discussion forums.