["Alone with the taboo" - The social support experienced by women with vulvar neoplasia: a qualitative study]. / "Allein mit dem Tabu" ­ Wie Frauen mit vulvären Neoplasien die Unterstützung durch ihr soziales Umfeld beschreiben ­ Eine qualitative Studie.

"Alone with the taboo" - The social support experienced by women with vulvar neoplasia: a qualitative study Abstract. BACKGROUND: Cancer of the vulva is a gynaecological disease often with relevant impact for these women's daily life. On top of the medical complications, psychological problems might arise as well, due to the impaired quality of life and the withdrawal from social life. We do not know whether and what type of support is given to these patients. AIM: The qualitative study aimed at describing how the affected women experience the support they receive from their social environment from the time of the diagnosis to six months postoperatively. METHODS: A qualitative design was used. In a secondary analysis, 20 transcribed interviews from the WOMN-PRO study were analysed by qualitative content analysis according to Mayring. RESULTS: The findings from the study resulted in four main categories: having a serious disease shows how the patients experience the diagnosis as a shock and are confronted with questions of guilt and taboos. The category feel alone was strongly represented with features of not-speaking out, not looking at it and not-acting. Do it on your own features descriptions of the strategies the women use to get out of their loneliness. In experience help, it is shown that women who try to get in touch with their social environment usually receive support. CONCLUSIONS: Patients have a high demand for information concerning the disease and its possible impacts on their daily life as well as emotional and practical support from their families / partners and especially from health professionals. We recommend designating someone who acts throughout the whole treatment process as a mediator and a person of trust.

Are written information or counseling (WOMAN-PRO II program) able to improve patient satisfaction and the delivery of health care of women with vulvar neoplasms? Secondary outcomes of a multicenter randomized controlled trial / Können schriftliche Informationen oder eine Beratung (WOMAN-PRO II Programm) bei Frauen mit vulvären Neoplasien die Patientenzufriedenheit und den Versorgungsprozess verbessern? Sekundäre Outcomes einer multizentrischen randomisiert kontrollierten Studie

Background: Patients with vulvar neoplasms report a lack of information, missing support in self-management and a gap in delivery of health care. Aim: The aim of the study was to investigate if written information or counseling based on the WOMAN-PRO II program are able to improve patient satisfaction and the delivery of health care from the health professional's perspective of women with vulvar neoplasms. Method: Patient satisfaction and the delivery of health care have been investigated as two secondary outcomes in a multicenter randomized controlled parallel-group phase II study (Clinical Trial ID: NCT01986725). In total, 49 women, from four hospitals (CH, AUT), completed the questionnaire PACIC-S11 after written information (n = 13) and counseling (n = 36). The delivery of health care was evaluated by ten Advanced Practice Nurses (APNs) by using the G-ACIC before and after implementing counseling based on the WOMAN-PRO II program. Results: There were no significant differences between the two groups identified (p = 0.25). Only few aspects were rated highly by all women, such as the overall satisfaction (M = 80.3 %) and satisfaction with organization of care (M = 83.0 %). The evaluation of delivery of health care by APNs in women who received counseling improved significantly (p = 0.031). Conclusions: There are indications, that the practice of both interventions might have improved patient satisfaction and counseling the delivery of health care. The aspects that have been rated low in the PACIC-S11 and G-ACIC indicate possibilities to optimize the delivery of health care.

'Feeling someone is there for you' - experiences of women with vulvar neoplasia with care delivered by an Advanced Practice Nurse.

AIMS AND OBJECTIVES: To explore the experiences of women with vulvar neoplasia with care delivered by an Advanced Practice Nurse. BACKGROUND: Women with vulvar neoplasia suffer from a high number of symptoms and report a lack of information and support by health care professionals. Further, talking about their disease, which is still a social taboo, is difficult for them. From approaches for other patients, it can be suggested that support from an Advanced Practice Nurse can be helpful. For Advanced Practice Nurse development, implementation and evaluation, it is important to assess patients' perceptions. But so far, little is known about how patients with vulvar neoplasia experience support of an Advanced Practice Nurse. DESIGN: A qualitative interview study was chosen to gain understanding of the experience of women with vulvar neoplasia who received care delivered by an Advanced Practice Nurse. METHODS: Narrative interviews were conducted with a purposive sample of 13 women with vulvar neoplasia after they received care from an Advanced Practice Nurse for six months. Thematic analysis was used to analyse the data from the interviews. RESULTS: Four main themes could be identified: a trusting relationship; accessibility; feeling safe and secure; and feeling someone is there for you. Women felt more secure and less alone in the experience of their illness through having the possibility of contacting an Advanced Practice Nurse and getting sufficient information and psychosocial support. CONCLUSIONS: Women with vulvar neoplasia experienced care delivered by an Advanced Practice Nurse as 'feeling someone is there for you'. Due to the localisation of the disease and the associated social taboo, psychosocial support from the Advanced Practice Nurse beyond months after surgery was very important for them. RELEVANCE TO CLINICAL PRACTICE: Addressing psychosocial needs in caring for women with vulvar neoplasia must be given greater attention in clinical practice. Further, continuous nursing support delivered by an Advanced Practice Nurse beyond the acute treatment phase can be recommended.

Recommendations for symptom management in women with vulvar neoplasms after surgical treatment: An evidence-based guideline.

PURPOSE: To develop an evidence-based guideline for nurses and other health care professionals involved in pre- and postsurgical care of women with vulvar cancer (VC) or vulvar intraepithelial neoplasia (VIN). METHODS: This evidence-based guideline was developed according to six domains of the methodological framework AGREE II. Literature research with focus on cancer care, symptom management and self-management/counselling was conducted from April to August 2013 in the databases CINAHL, Cochrane Library, PsycINFO, PubMed as well as in 14 international guideline databases. Interdisciplinary experts (n = 14) were involved in the development of the guideline from December 2013 to January 2014. This guideline is currently tested in the WOMAN-PRO II RCT (Clinical Trial No: NCT01986725). RESULTS: For the definition of recommendations, five guidelines, one meta-analysis, two systematic reviews and two randomized controlled trials were included. In total, 24 recommendations were formulated to answer 22 clinical questions based on patients' perspective and experts' opinion. Evidence ranged from 3.5 to 5 (3.5 = weak evidence and/or clinical relevance, 5 = best evidence and/or clinical relevance). The recommendations were subsumed under different themes regarding physical, psychological and psychosocial aspects. CONCLUSIONS: The clinical practice guideline developed in this study firstly provides recommendations for symptom management issues focusing on self-management interventions for women with VC or VIN. As an interdisciplinary guideline it should be used in addition to the existing medical guideline in the German speaking context.

[Between anxiety and hope: the experiences of women with vulval intraepithelial neoplasia during their illness trajectory - a qualitative approach]. / Bangen und Hoffen: Erfahrungen von Frauen mit vulvären intraepithelialen Neoplasien während des Krankheitsverlaufs - Eine qualitative Studie.

The vulvar intraepithelial neoplasia (VIN) is a rare chronic skin condition that may progress to an invasive carcinoma of the vulva. Major issues affecting women's health were occurring symptoms, negative influences on sexuality, uncertainty concerning the illness progression and changes in the body image. Despite this, there is little known about the lived experiences of the illness trajectory. Therefore, the aim of this study was to describe the experiences of women with VIN during the illness trajectory. In a secondary data analysis of the foregoing qualitative study we analysed eight narrative interviews with women with VIN by using thematic analysis in combination with critical hermeneutics. Central for these women during their course of illness was a sense of "Hope and Fear". This constitutive pattern reflects the fear of recurrence but also the trust in healing. The eight narratives showed women's experiences during their course of illness occurred in five phases: "there is something unknown"; "one knows, what IT is"; "IT is treated and should heal"; "IT has effects on daily life"; "meanwhile it works". Women's experiences were particularly influenced by the feeling of "embarrassment" and by "dealing with professionals". Current care seems to lack adequate support for women with VIN to manage these phases. We suggest, based on our study and the international literature, that new models of counselling and providing information need to be developed and evaluated.

Sexuality in Irish women with gynecologic cancer.

PURPOSE/OBJECTIVES: To investigate sexual self-concept, sexual relationships, and sexual functioning, and the relationship between these and certain demographic variables of Irish women, following a diagnosis of gynecologic cancer. DESIGN: Descriptive, correlational. SETTING: Outpatient gynecologic oncology clinic in a large university hospital in Southern Ireland. SAMPLE: 106 women with a diagnosis of and treatment for various gynecologic cancers (cervical, ovarian, endometrial, and vulvar). METHODS: The Body Image Scale, Sexual Esteem Scale, and Sexual Self-Schema Scale were administered to women a minimum of six weeks postdiagnosis of any form of gynecologic cancer to measure sexual self-concept; the Intimate Relationships Scale to measure sexual relationships; and the Arizona Sexual Experiences Scale to measure sexual functioning. MAIN RESEARCH VARIABLES: Sexual self-concept, body image, sexual esteem, sexual self-schema, sexual relationships, and sexual functioning. FINDINGS: Participants reported negative changes in relation to their sexual self-concept, sexual relationships, and sexual functioning. Participants reported negative changes in relation to all stages of the sexual response cycle. CONCLUSIONS: Gynecologic cancer has the potential to negatively affect a woman's sexual self-concept, sexual relationships, and sexual functioning. Sexuality is a multidimensional construct and must be measured in this way. IMPLICATIONS FOR NURSING: Healthcare professionals must use a holistic approach when providing information and support to patients with gynecologic cancer. Information must be provided to women on how cancer and its treatment has the potential to affect their sexual self-concept, sexual relationships, and sexual functioning, including information on how to overcome these alterations.

Reflective practice: a learning tool for student nurses.

Reflection is a vital skill in contemporary nursing with student nurses expected to engage in reflective learning from the very beginning of the nurse educational programme. This article demonstrates the meaningful learning that resulted as a consequence of using critical reflection on practice. Gibbs' (1988) cycle aided the process highlighting the practical application of this cyclical framework to the author - a first-year student nurse. Matters concerning gender issues in nursing and professional conduct emerged from the analysis and were inherently explored. The article concludes by demonstrating the personal benefits of using Gibbs' (1988) cycle to varying situations and thus promoting its excellence as a learning tool for student nurses worldwide as a consequence.

The clinical nurse specialist in gynaecological oncology-the role in vulval cancer.

Gynaecological malignancy has an immense impact on the well-being of women. In order for these women clearly to understand their disease, investigations, treatment options and prognosis, it is essential that high-quality information be delivered in an appropriate environment. Effective communication is the essence of good relationships between the health professional and the patient. Patients' psychological, social and sexual rehabilitation following treatment for gynaecological cancer demand a holistic, pro-active approach by professionals who are skilled in the provision of this care. Within a multidisciplinary team (MDT), the clinical nurse specialist (CNS) is in a key position to be able to address these often complex and sensitive issues. This chapter explores the unique role of the CNS in the care of gynaecological cancer patients, and the care of vulval cancer patients in particular. The successful development of medical/nursing partnerships enables women with gynaecological cancer to gain proper access to essential expert knowledge and information and thereby to make informed decisions.

[Palliative treatment in gynecologic cancer]. / Palliativ behandling ved gynekologisk kreft.

BACKGROUND: Data on the need for palliative care related to disease groups are very limited. MATERIAL AND METHODS: A retrospective analysis was performed on the hospital records of 228 patients who died from gynaecologic cancer during the 1988-1997 period. RESULTS: 76% of deaths took place in hospital; 12% at home. Median terminal hospital stay was 13 days. Symptoms from intestinal obstruction were dominating in 30% of cases and most frequently seen in patients with ovarian cancer. Palliative intestinal surgery was performed in 38% of patients with ovarian cancer, median survival being 5 months (range 10 days-7 years), perioperative mortality (within 30 days) 13%. Cachexia dominated in 27% and was more often present when death occurred at home. Assistance from a gastroenterologic surgeon, urologist, haematologist or anaesthesiologist was needed in 32% of cases. One in two patients received parenteral pain relief in the terminal phase, for a median period of five days. Palliative radiotherapy was given 21% of the patients, most often in cervical and endometrial cancer, and chemotherapy or hormonal therapy was used in 36%. Minor interventions like laparocentesis, pleurocentesis, tumour resections, and various forms of urinary deviations were frequent. INTERPRETATION: Hospital deaths are more common among patients suffering from gynaecologic cancer than among cancer patients in general (55% in Norway), and the need for multimodal hospital service is large. We see substantial benefits in the Norwegian model in which a gynaecologist experienced in oncology has comprehensive responsibility for the treatment, supported by other specialists and the primary health service.

'Listen, listen trust your own strange voice' (psychoanalytically informed conversations with a woman suffering serious illness).

This paper argues that the authentic voice of suffering can be denied to people with serious illness. Anguish and expressions of grief are sometimes replaced by joviality. Amid suffering, voices of anguish become strange inner voices that challenge defences of cheeriness and so are avoided, go unheard or are ignored. Bolstered by the everydayness of ward events and hospital life, suppression, repression and denial mean that people with serious illness can suffer without a voice. Listening to others requires the ability to listen to one's own inner voices and recognize how they might guide exchanges. By avoiding conducting conversations in ways dictated by our own fears, worries and fantasies we can listen, and in doing so allow shifts in awareness. Silent suffering can change to expressive suffering allowing a person to reach an autonomous self and so an authentic voice. The seriousness of a situation can be grasped and so life appreciated for what it is. Decisions can be made, business finished and relationships esteemed or otherwise. Through the format of brief therapeutic conversations, listening has a role to play in helping people with serious illness discover their autonomous and authentic voice. The discussion concludes with the suggestion that the need for throughput and roles and tasks demanded on nurses in general settings limits time and resources, and so liaison mental health nursing has a role to play. A specialist practitioner might offer conversational therapies, support nursing and medical staff and teach psychological concepts, thus contributing to an environment in which uncertainty is tolerated.

Cancer of the vulva and vagina.

Vulvar and vaginal cancer are rare malignancies and require aggressive treatment for survival. The prospect for cure in early stage disease is excellent. The major treatment modalities for these diseases, surgery and radiation, will affect structural alteration of the genitalia, requiring physical and psychological rehabilitation over an extended period of time. Quality of life is an important focus in cancer nursing. Efforts to control symptoms or adverse effects and to enhance the psychological adjustment are important aspects of patient care. Vulvar and vaginal cancer leave obvious residual effects, and disfigurement and dysfunction will be a part of these women's lives. Husbands and partners are also affected, and adjustments of both the patient and her partner are expected to continue for years. An active position assumed by the nurse will aid the patients' adaptive responses to these devastating diseases.

Invasive cancer of the vulva. Diagnosis, surgical management, and nursing care.

Postoperatively, vulvar cancer patients visit the physician's office frequently until the incision is healed completely. Follow-up visits are then continued biannually and eventually annually. Postoperative mortality is directly related to the extensiveness of the disease at the time of diagnosis. If the lymph nodes are negative at the time of surgery, the five-year survival rate approaches 90%; however, if lymph nodes are positive, the five-year survival rate drops to about 33%. Because most women diagnosed with invasive cancer of the vulva are elderly, many die of noncancer related diseases while tumor free. Recurrence, if it should occur, may be distant or local. Local recurrence usually occurs at the margins of the resection and distant recurrence in the deep pelvic nodes. The radical vulvectomy procedure with bilateral groin node dissection poses a significant challenge to the perioperative nursing team. This team plays an important role in helping the patient and her partner adjust to this extensive procedure.

Self-care nursing model for patients experiencing radical change in body image.

A description of the integration of concepts from other disciplines into the nursing self-care model is presented. Orem's model of the patient as a self-care, goal-directed, decision-making agent is applied to the care of a woman recovering from a radical vulvectomy. The model can be used in other nursing care situations in which the patient's body image is altered.