Ragnhild Johanne Tveit Sekse

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 womens 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 Heideggers 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.

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.

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.

Living in a Changed Female Body After Gynecological Cancer

In this article we elaborate on how living in a changed female body after gynecological cancer is experienced 5 to 6 years after treatment. Based on a phenomenological life-world perspective, 32 interviews with 16 women showed that changes involved dealing with unfamiliarity related to experiences of bodily emptiness, temperature fluctuations, sex-life consequences, vulnerability, and uncertainty. Findings are discussed in relation to Svenaeuss perspective on illness as an unhomelike being-in-the-body and being-in-the-world. This perspective could spur health personnel to improve patient information and dialogue and thus facilitate a process leading to more familiarity and homelikeness for patients during treatment and follow-up.

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.

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 patients 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 personnels ability to communicate and their expertise in diagnosing and treating difficulties relating to sexuality.

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 whats 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 nurses 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 nurses 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.

Shyness and openness--common ground for dialogue between health personnel and women about sexual and intimate issues after gynecological cancer.

In this article we explore shyness and openness related to sexuality and intimacy in long-term female survivors of gynecological cancer, and how these women experienced dialogue with health personnel on these issues. Further analysis on two core themes, based on empirical data presented elsewhere, inspired continued theoretical and philosophical thinking drawing on Løgstrups expressions of life and unified opposites. The findings show that gynecological cancer survivors and health personnel share common ground as human beings because shyness and openness are basic human phenomena. Health personnels own movement between these phenomena may represent a resource because it can help women to handle sexual and intimacy challenges following gynecological cancer.

Women's experiences when unsure about whether or not to have an abortion in the first trimester

ABSTRACT Abortion during the first trimester is legal in most Western countries. However, deciding to terminate a pregnancy is a challenging process, and some women arrive at the abortion clinic still not absolutely certain. We explored the experiences of 13 pregnant Norwegian women struggling to finalize their decision, interviewing them before and after their decision. Verification of the pregnancy meant a new reality for the women. They started to consider their readiness, describing the experience as a lonely journey during which their values were challenged. A feeling of existential loneliness dominated the decision-making process and the implementation.

Undervisning og veiledning i gruppe for kvinner behandlet for underlivskreft. En hjelp i rehabiliteringen

Aim: The aim of the article is to describe a nurse-led intervention and to evaluate to what extent it is helpful for the participants in their follow-up after treatment for gynecological cancer. Background: Women beyond gynecological cancer have several needs that the routine follow-ups do not adequately fulfill. Studies show that follow-ups with a more holistic approach are most advantageous. Methods: The standardized intervention, with theoretical basis in Antonovskys salutogenetic thinking and Rogers client centered therapy, is described. A self-reported process evaluation form was answered by 34 (out of 45) women who participated in the group intervention. Findings: Women were satisfied with the group intervention, which seemed to meet the need for knowledge and information on various current topics related to life after cancer. Sharing experiences with one another and being in dialogue with experts and mentors who recognized the women, addressed their uncertainty and gave answers to their questions, was important for the outcome of the intervention. Conclusion: The nurse-led intervention seems to be useful for women treated for gynecological cancer. The intervention can be one important contribution to improve follow-up after cancer treatment, and thus to the womens coping resources and rehabilitation process.