Redefining sexual health after gynaecological cancer: Lived experiences from Gynea, a digital rehabilitation programme.

BACKGROUND: Gynaecological cancer illness and treatment have a significant impact on women's sexual health and concerns regarding sexual health are known to be an unmet need in survivors. The digital support programme Gynea was designed to enhance women's health, including sexual health, after gynaecological cancer treatment. This study aimed to explore how cancer survivors experienced participation in Gynea. METHODOLOGY: This is a phenomenological hermeneutic study. Individual, in-depth semi-structured interviews were conducted to explore lived experiences. Twenty women were interviewed after completing the Gynea programme. The transcripts were analysed using Lindseth and Norberg's phenomenological hermeneutic method. FINDINGS: Three main themes (with subthemes) emerged from the analysis: (1) A silent existential trauma; (2) Redefining sexual health; (3) Communicating with a partner about sexuality. The women redefined sexual health rather than just being sexual intercourse, being a rediscovery of the body. The women's increased awareness and understanding of their own sexual health empowered their communication about their sexuality with their partners. This was important for regaining sexual health and intimacy in their relationships. CONCLUSION: Participation in Gynea helped to strengthen the women's sexual integrity. Knowledge and support empowered them to take care of their sexual needs and communicate these with their partners. IMPLICATIONS FOR PATIENT CARE: Healthcare services and nurses need to be aware that sexual health is an existential state of being, in which good sexual health does not necessarily equate to sexual function, but rather to sexual empowerment. Digital support with nurse guidance can support women in caring for their sexual health after cancer illness by thematizing sexual health with a holistic approach and should be part of the medical treatment. PATIENT OR PUBLIC CONTRIBUTION: Twenty gynaecological cancer survivors contributed by sharing their experiences from the sexual health module in Gynea.

Barriers and facilitators for leading nursing homes through the COVID-19 pandemic: A focus group study in Norway.

BACKGROUND: During the COVID-19 pandemic, nursing home leaders implemented infection control to protect residents and staff. AIM: To understand the barriers and facilitators for leading nursing homes through the COVID-19 pandemic. METHODS: We invited 34 nursing homes to participate, and 20 leaders (59%) attended focus group interviews. The COM-B model and the theoretical domains framework were used in design and analysis of the study. RESULTS: The barriers for infection control were organisational unpreparedness, high volumes of information, lack of clinical skills, protective equipment, and testing capacity, the nursing home's architectural design, health authorities' low priority of nursing homes, staff's fear, and mental pressure on the leaders over time. The facilitators were having a customised corona plan, change of routines, certification of new skills, access to the municipal quality system, the ability for crisis leadership, loyalty to the nursing home, and support from the environment. The number of part-time positions and the opportunity to outsource parts of the services were also important determinants for infection control. CONCLUSIONS: The results identify several barriers and facilitators for nursing home leaders' behaviour for infection control. The results confirm the importance of supporting the leaders' resilience and crisis leadership while working in the pressurised environment of a pandemic. RELEVANCE TO CLINICAL PRACTICE: The study provides important insights into barriers and facilitators for leading nursing homes through the COVID-19 pandemic, which could help to inform future strategies for infection control. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Sexual Health and Quality of Life in Cancer Survivors With Pelvic Radiation Injuries.

BACKGROUND: Little knowledge exists on how late radiation tissue injuries (LRTIs) affect sexual health and health-related quality of life (HRQOL) in pelvic cancer survivors. OBJECTIVE: To explore sexual health and HRQOL in cancer survivors with pelvic LRTI. METHOD: A descriptive cross-sectional study was conducted, including 83 pelvic cancer survivors with LRTI. Data on sexual health, LTRIs, and HRQOL were collected by validated questionnaires, whereas medical variables were collected from medical records. RESULTS: Participants' sexual health was severely impaired. Bowel and urinary LRTIs correlated with most of the symptoms of impaired sexual health (Pearson r = -0.241 to -0.376, P < .05-.01). Men and women reported different sexual challenges related to functional and symptomatic variables but not on the gender-neutral aspects of sexual health. Younger survivors, gynecological cancer survivors, or those who received external and internal radiation or additional chemotherapy reported significantly (P < .05-.001) higher levels of sexual impairment. Participants' HRQOL was impaired. Several dimensions of sexual health correlated significantly (P < .05-.001) with the functional dimensions of reduced HRQOL. CONCLUSION: Cancer survivors with pelvic LRTIs experience severely impaired sexual health across genders, with negative consequences for their HRQOL. IMPLICATIONS FOR PRACTICE: Healthcare professionals should include sexual health as an important part of individual patients' health and HRQOL throughout their treatment trajectory and follow-up, by screening sexual health, implementing measures and interventions to promote sexual health, and supporting survivors' coping and health-promoting strategies.

Impaired sexual health among women treated for vulvar cancer: An integrated review.

BACKGROUND: Although gynaecological cancer's negative effects on sexual function are well known, most studies on the subject have not included vulvar cancer patients or a multidimensional perspective on sexual health. Therefore, this review aimed to address this research gap and explored the impact of vulvar cancer on women's sexual health from a multidimensional perspective. METHODOLOGY: An integrated review was conducted, as described by Whittemore and Knafl. The PubMed, CINAHL, PsycINFO and Embase databases were searched in March 2021 and updated in August 2022 and March 2023. The data were thematically analysed using NVivo, and the PRISMA-ScR and ENTREQ guidelines were followed. FINDINGS: The following themes were identified in the 28 reviewed articles: impact of a changed female body, impact on women's sexual identity, consequences for women's sexual relationships and unmet needs and loneliness caused by taboos about sexual health. DISCUSSION: Women's impaired sexual health after vulvar cancer points to a great need to understand and holistically investigate sexual health. In addition, healthcare professionals have an obligation to care for the sexual health issues of patients with vulvar cancer. However, most questionnaires used in the selected studies revealed a narrow understanding of sexual health and focused on sexuality as a genital activity. CONCLUSION: The sexual health of women with vulvar cancer was tabooed and stigmatised for patients and healthcare professionals. Consequently, women received sparse sexual guidance, felt isolated and had unmet needs. IMPLICATIONS FOR CLINICAL PRACTICE: Healthcare professionals need knowledge and training on how to break taboos and address the sexual needs of vulvar cancer patients. Systematic screenings for sexual health needs should be conducted using a multidimensional perspective. TRIAL AND PROTOCOL REGISTRATION: The protocol was preregistered at the Open Science Framework (www.osf.io), registration DOI: https://doi.org/10.17605/OSF.IO/YDA2Q PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Development of a Framework and the Content for a Psychoeducational Internet-Delivered Intervention for Women after Treatment for Gynecological Cancer.

The number of women treated for gynecological cancer is increasing. At the same time, the duration of in-patient hospitalization has decreased, and follow-up with its primary focus on early recognition of recurrence does not meet all patients' needs. One method of follow-up may be digital intervention. This study describes the development of a psychoeducational Internet-delivered intervention targeting women's psychosocial needs during the follow-up period after treatment for gynecological cancer. The project consisted of three phases following the UK Medical Research Council Framework guidelines for the development of complex interventions. Phase one identified the evidence in the field, phase two identified the relevant theoretical framework, and phase three included a two-year work process including focus group interviews and think aloud interviews with users. Through the steps of literature review, theoretical framework, and an iterative development process with users and other stakeholders, a six-week program was developed. The program included psychoeducational information, multimedia, exercises, and weekly telephone follow-up with a dedicated nurse. This Internet-delivered intervention can be a novel method for addressing the gap in the provision of follow-up for women after treatment for gynecological cancer.

Patients' quest for recognition and continuity in health care: time for a new research agenda?

User involvement is important in democratization of health care and is assumed to contribute to better and more relevant research. Despite increased requirements for user involvement in research, more studies are still needed. This study aimed at exploring what research agenda people with varied health problems consider as important, based on their own experience. The study had a phenomenological approach with a qualitative design. The sample consisted of 23 informants; nine had been critically ill and 14 were suffering from chronic muscle pain. Data were collected in five focus group interviews and one individual interview. A phenomenological approach was used in analyzing the data. Written consent was obtained from all the participants, and ethical considerations were taken throughout the entire research process. Despite various experiences among the participants, a quest to be taken seriously over time by healthcare professionals emerged as a strong meaning structure in both groups. Based on these experiences, continuity across lifetime changes turned out to be an important research topic for future research. User involvement should be appreciated in all parts of the research process. A crucial prerequisite is that the users get the opportunity to bring their own experiences into the process.

Lived experiences and quality of life after gynaecological cancer-An integrative review.

AIM AND OBJECTIVES: To review the literature on Nordic women's lived experiences and quality of life (QoL) after gynaecological cancer treatment. BACKGROUND: While incidence and survival are increasing in all groups of gynaecological cancers in the Nordic countries, inpatient hospitalisation has become shorter in relation to treatment. This has increased the need for follow-up and rehabilitation. DESIGN: Integrative literature review using the Equator PRISMA guidelines. METHODS: The review was selected, allowing inclusion of both experimental and nonexperimental research. The search included peer-reviewed articles published 1995-2017. To frame the search strategy, we applied the concept of rehabilitation, which holds a holistic perspective on health. RESULTS: Fifty-five articles were included and were contextualised within three themes. Physical well-being in a changed body encompasses bodily changes comprising menopausal symptoms, a changed sexual life, complications in bowels, urinary tract, lymphoedema and pain, bodily-based preparedness and fear of recurrence. Mental well-being as a woman deals with questioned womanliness, the experience of revitalised values in life, and challenges of how to come to terms with oneself after cancer treatment. Psychosocial well-being and interaction deals with the importance of having a partner or close person in the process of coming to terms with oneself after cancer. Furthermore, the women needed conversations with health professionals around the process of coping with changes and late effects, including intimate and sensitive issues. CONCLUSION: Years after gynaecological cancer, women have to deal with fundamental changes and challenges concerning their physical, mental and psychosocial well-being. Future research should focus on how follow-up programmes can be organised to target the multidimensional aspects of women's QoL. Research collaboration across Nordic countries on rehabilitation needs and intervention is timely and welcomed. RELEVANCE TO CLINICAL PRACTICE: To ensure that all aspects of cancer rehabilitation are being addressed, we suggest that the individual woman is offered an active role in her follow-up.

The nurse's role in palliative care: A qualitative meta-synthesis.

AIMS AND OBJECTIVES: To explore how nurses, across various health systems, describe their role in providing palliative care for patients with life-threatening illnesses. BACKGROUND: Despite the fact that nurses make up the largest group of healthcare professionals, little is known about their role in palliative care, across health services. DESIGN: A qualitative systematic review of studies. METHODS: A search was made for relevant articles, published between January 2000-June 2016. Twenty-eight articles were selected and analysed using thematic synthesis. RESULTS: The themes that emerged from the analysis were as follows: Being available, which gave nurses a pivotal role in palliative care and paved the way for Being a coordinator of care for patients and relatives, as well as for other health personnel. Doing what's needed was to handle an enormous breadth of activities, always in a holistic framework of understanding. Being attentively present and dedicated as well as using flexible and nontraditional methods was essential in the role. Standing in demanding situations dealt with lack of time and resources, limited legitimacy, handling ethical dilemmas and being in need of support and knowledge. CONCLUSION: Being available as well as a coordinator characterises the nurse's role across healthcare systems. The nurse acts as a link between different levels of health care, between different professions and between patient and family, which contribute to ensuring the quality of care to the individual patient. The review illuminates that the basic tenets of care in nursing are also fundamental to the nurse's role in palliative care. To be able to give individually tailored palliative care to patients with life-threatening illnesses and their relatives, the nurses need all their knowledge of basic nursing. Situations challenge nurses in practical, relational and moral dimensions of care and make demands on their role in a comprehensive way. RELEVANCE TO CLINICAL PRACTICE: Nurses need knowledge and training, guidance and support to fulfil their role.

Sexual activity and functioning in women treated for gynaecological cancers.

AIMS AND OBJECTIVES: A description and comparison of sexual activity and function in relation to various gynaecological cancer diagnoses, treatment modalities, age groups, psychological distress and health-related quality of life. BACKGROUND: Various forms of gynaecological cancer have the potential to negatively influence sexual functioning, but there are few studies that describe and compare sexual activity and functioning according to diagnosis. DESIGN: A descriptive cross-sectional study. METHODS: The study includes 129 women from an intervention study. The questionnaires addressed sexuality, psychological distress, health-related quality of life and demographics. Disease and treatment characteristics were extracted from medical records. RESULTS: Close to two-thirds of the women were sexually active. However, 54% of the sexually active women reported that they were not satisfied or little satisfied with their sexual activity. About half of the women reported dryness in the vagina, and 41% reported pain and discomfort during penetration. There were no significant differences concerning pleasure and discomfort related to treatment modality, diagnoses or FIGO stage. CONCLUSION: Health personnel should make a priority of sexuality throughout a patient's cancer treatment and in the follow-up, as sexuality is a vital part of a good life. RELEVANCE TO CLINICAL PRACTICE: Since the patients experience relatively low satisfaction with their sexual activity and many report pain during penetration, health personnel need to be sensitive to the woman, her questions, and her needs. Of importance are also the personnel's ability to communicate and their expertise in diagnosing and treating difficulties relating to sexuality.

Identifying Needs: a Qualitative Study of women's Experiences Regarding Rapid Genetic Testing for Hereditary Breast and Ovarian Cancer in the DNA BONus Study.

Genetic testing for hereditary breast and ovarian cancer is increasingly being offered in newly diagnosed breast and ovarian cancer patients. This genetic information may influence treatment decisions. However, there are some concerns that genetic testing offered in an already vulnerable situation might be an extra burden to these women. The aim of this study was to explore the experiences of women who had been offered and accepted genetic testing when newly diagnosed with breast or ovarian cancer. Four semi-structured focus-group interviews were conducted with 17 women recruited from a Norwegian multicenter study. The material was condensed, and conventional qualitative analysis was used to identify patterns in the participants' descriptions. Three core themes were identified: 1) being "beside oneself" 2) altruism and ethical dilemmas 3) the need for support and counselling to assist the decision process. The present study indicates that women who are offered genetic testing when newly diagnosed with breast or ovarian cancer want a consultation with a health professional. Personalized support and counselling might empower women to improve their ability to manage and comprehend this overwhelming situation, and find meaning in this experience.

Researcher-researched relationship in qualitative research: Shifts in positions and researcher vulnerability.

BACKGROUND: The researcher role is highly debated in qualitative research. This article concerns the researcher-researched relationship. METHODS: A group of health science researchers anchored in various qualitative research traditions gathered in reflective group discussions over a period of two years. RESULTS: Efforts to establish an anti-authoritarian relationship between researcher and researched, negotiation of who actually "rules" the research agenda, and experiences of shifts in "inferior" and "superior" knowledge positions emerged as central and intertwined themes throughout the discussions. The dual role as both insider and outsider, characteristic of qualitative approaches, seemed to lead to power relations and researcher vulnerability which manifested in tangible ways. CONCLUSION: Shifting positions and vulnerability surfaced in various ways in the projects. They nonetheless indicated a number of similar experiences which can shed light on the researcher-researched relationship. These issues could benefit from further discussion in the qualitative health research literature.

Midwifery students first encounter with the maternity ward.

Considerable research has been made in order to find what promotes students' learning in general, but few studies have included midwifery students and their learning in clinical practice. The purpose of this study was to get a better understanding of the midwifery students' first encounter with the maternity ward and of what was essential to them in the learning environment. A qualitative study, based on in-depth interviews with six students during their first clinical practice at a maternity ward, was conducted. The findings show that the students needed to feel their presence desired and to be included in the activities in the ward. Learning needed to be based on the students' expectations, understanding and previous experiences. The most important factor influencing the students' well-being and learning was their relationships with their mentor. In conclusion, learning in a clinical setting required more than just motivated students. Engaged mentors, who linked the students' previous experiences and expectations to the clinical practice, were crucial to learning outcomes. Mutual engagement, shared understanding and common goals were imperative for the students' experiences of a good learning environment.

Fatigue and quality of life in women treated for various types of gynaecological cancers: a cross-sectional study.

AIMS AND OBJECTIVES: To examine the prevalence of cancer-related fatigue in women treated for various types of gynaecological cancers and, for these cancers, to assess fatigue in relation to distress, health-related quality of life, demography and treatment characteristics. BACKGROUND: Advances in treatment of cancer have improved the likelihood of survival. Consequently, there are a growing number of patients who become survivors after cancer and who face side effects even years after treatment. One of the most frequently reported side effects across all types and stages of the disease is cancer-related fatigue. DESIGN: A descriptive cross-sectional study. METHODS: One hundred and twenty women treated for gynaecological cancers who were participants in an intervention study were included. Fatigue, psychological distress, health-related QoL and demographics were assessed by questionnaires. Disease and treatment characteristics were extracted from medical records. RESULTS: Cancer-related fatigue was reported in 53% of the women treated for gynaecological cancers, with a higher proportion in the group of cervical cancer, followed by ovarian cancer. Younger participants reported fatigue more frequently than older participants. When adjusting for age, the type of cancer a woman experiences was shown to have little impact on her risk of experiencing fatigue. The participants with fatigue reported higher levels of anxiety and depression than participants without fatigue. There was a relationship between fatigue and quality of life as measured by SF-36 domains. CONCLUSION: The findings underscore the importance of screening for fatigue, patient education and symptom management. This should be included in a standard procedure during treatment and follow-up. Both somatic and psychological aspects of fatigue should be emphasised. RELEVANCE TO CLINICAL PRACTICE: The findings imply the need for health personnel to have focus on fatigue during the entire cancer trajectory of women after gynaecological cancers, as well as the need for screening, information, guidance and symptom management.

Education and counselling group intervention for women treated for gynaecological cancer: does it help?

BACKGROUND: Women who have been through gynaecological cancer, experience challenges on many levels after diagnosis and treatment. Studies show that, in order to help women in their rehabilitation process, there is a need for holistic care and follow-up. AIM: The aim of this qualitative study is to provide insight into women's own lived experiences of participating in an education and counselling group intervention after curative treatment for gynaecological cancer. METHOD: A qualitative study based on data from three focus groups with 17 women who had participated in a nurse-led education and counselling group intervention after treatment for gynaecological cancer. RESULTS: The main findings show that participation in the rehabilitation group was described as a special community of mutual understanding and belonging. Education and the sharing of knowledge provided a clearer vocabulary for, and understanding of, the women's own lived experiences. The presence of dedicated and professional care workers was reported to be essential for the outcome of the group intervention. CONCLUSION: Attending a nurse-led education and counselling group intervention had a positive impact on various aspects of the women's lived experiences. The programme also provided professionals with important insights into the patients' views and feelings regarding cancer treatment, trajectories and rehabilitation. This knowledge has already proven itself useful in clinical practice for improving staff communication skills and psycho-social support related to gynaecological cancer care.

Life beyond cancer: women's experiences 5 years after treatment for gynaecological cancer.

The number of long-term survivors after cancer is increasing, mainly as a consequence of more efficient treatment. This creates a need for knowledge about experiences of life after cancer. The aim of this study is to gain a deeper understanding of lived experience of long-term cancer survivors and how they experienced cancer care. A qualitative study was performed, based on 32 in-depth interviews with 16 women declared as long-term survivors, aged 39-66. The first interview was made 5 years after treatment and the second a year later. The study has a phenomenological-hermeneutical approach in which the women's own experiences are the basis for understanding their life-world. The long-term surviving women experienced profound changes in their lives and had to adapt to new ways of living. Three core themes were identified: living with tension between personal growth and fear of recurrence: the women spoke of a deep gratitude for being alive and of basic values that had become revitalized. They also lived with a preparedness for recurrence of cancer. Living in a changed female body: the removal of reproductive organs raised questions about sexual life and difficulties related to menopause. Feeling left alone - not receiving enough information and guidance after treatment: the process of sorting things out, handling anxiety, bodily changes and menopause were described as a lonesome journey, existentially and psycho-socially. The findings are discussed in relation to Heidegger's perspective of anxiety towards death, existential loneliness and humans as self-interpreting beings. Surviving cancer entails living with profound life-changes, demanding as well as enriching. Existing follow-up regimes need to sharpen focus on psycho-social aspects, information and guidance. Additional follow-up programmes, focusing solely on the individual woman and her specific needs, are necessary.