The unspoken disease: symptom experience in women with vulval neoplasia and surgical treatment: a qualitative study

Abstract

Women with vulval neoplasia often experience severe post-surgical complications. This study focuses on symptom experience of women during the first 6 months following surgical treatment for vulval neoplasia considering their socio-cultural context. In this qualitative study using a critical hermeneutic approach, narrative interviews were conducted. A purposeful sample of 20 patients was recruited from one Swiss and two German university hospitals. Content analysis was employed to analyse the transcribed interviews considering women's experiences and social perceptions. Narratives showed eight interrelated themes: delayed diagnosis, disclosed disease, disturbed self-image, changed vulva care, experienced wound-related symptoms, evoked emotions, affected interpersonal interactions and feared illness progression. The women experienced a general lack of information pertaining to above themes and all described strategies used to handle their situation, which affected their distress. The communication, assessment and treatment of symptoms were hampered by the society's and the health system's tendency to overlook these symptoms and leave them in the realm of the unspeakable. Health professionals need new strategies to support these women to recognise, assess and evaluate the seriousness of symptoms, and to communicate their symptom experience so that timely medical treatment is sought. This support may minimise potentially preventable complications and symptom-related distress.

Obesity is associated with worse quality of life in women with gynecologic malignancies: An opportunity to improve patient‐centered outcomes

“…The etiology of these QoL differences may be site-specific. For example, disparate QoL in cervical cancer may be due to a high incidence of poverty in this population(31), whereas vulvar cancer is frequently characterized by delayed diagnosis long after symptom onset (32, 33). Regardless of etiology, pre-treatment QoL scores have been associated with surgical and medical (chemotherapy) cancer treatment outcomes (34-38), this may indicate that certain gynecologic cancer patients are at differential risk of poor treatment outcomes.…”

‘Feeling someone is there for you’ – experiences of women with vulvar neoplasia with care delivered by an Advanced Practice Nurse

“…Additionally, talking with healthcare professionals is perceived as a negative experience (Jefferies & Clifford 2009). Study results suggest that women receive little or inadequate and conflicting information from healthcare professionals (Janda et al 2004, Senn et al 2011, Philp et al 2016. There are limited studies that address women's experiences with healthcare professionals and their expectations for optimal support.…”

Adaptation of the Possibilities for Activity Scale for women encountering cancer (PActS‐W)

“…After treatment for gynaecological cancer, women report feeling restricted in their ability to participate in activities, decreased quality of life (Akyuz et al .), feeling invisible (Jefferies & Clifford, ), and avoiding discussion on their physical and psychological experience due to embarrassment and fear of stigmatisation. Additionally, some women report fear of gynaecological conditions being associated with promiscuous behaviour (Senn et al .). Little is known about how their perceived societal pressures to participate in idealised activities, or the activities associated with the roles of a working‐age woman, could potentially contribute to restricting their participation in activity and their feelings of invisibility.…”

“…cervical, ovarian, uterine, vaginal and vulvar) is unique to women (Centers for Disease Control and Prevention, 2017) and (ii) gynaecological cancer directly involves organs related to femininity, sexual function and reproduction (Akyuz, Guvenc, Ustunsoz & Kaya, 2008). In a qualitative study about the post-surgical experience of women diagnosed with vulvar cancer, women described the surgeries (such as a partial or radial vulvectomy) as embarrassing, disfiguring and mutilating (Senn et al, 2011). After treatment for gynaecological cancer, women report feeling restricted in their ability to participate in activities, decreased quality of life (Akyuz et al), feeling invisible (Jefferies & Clifford, 2012), and avoiding discussion on their physical and psychological experience due to embarrassment and fear of stigmatisation.…”