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.

Usefulness of a Digitally Assisted Person-Centered Care Intervention: Qualitative Study of Patients' and Nurses' Experiences in a Long-term Perspective.

BACKGROUND: Person-centered care responsive to individual preferences, needs, and values is recognized as an important aspect of high-quality health care, and patient empowerment is increasingly viewed as a central core value of person-centered care. Web-based interventions aimed at empowerment report a beneficial effect on patient empowerment and physical activity; however, there is limited information available on barriers, facilitators, and user experiences. A recent review of the effect of digital self-management support tools suggests a beneficial effect on the quality of life in patients with cancer. On the basis of an overall philosophy of empowerment, guided self-determination is a person-centered intervention that uses preparatory reflection sheets to help achieve focused communication between patients and nurses. The intervention was adapted into a digital version called digitally assisted guided self-determination (DA-GSD) hosted by the Sundhed DK website that can be delivered face-to-face, via video, or by the combination of the 2 methods. OBJECTIVE: We aimed to investigate the experiences of nurses, nurse managers, and patients of using DA-GSD in 2 oncology departments and 1 gynecology department over a 5-year implementation period from 2018 to 2022. METHODS: This qualitative study was inspired by action research comprising the responses of 17 patients to an open-ended question on their experience of specific aspects of DA-GSD in a web questionnaire, 14 qualitative semistructured interviews with nurses and patients who initially completed the web questionnaire, and transcripts of meetings held between the researchers and nurses during the implementation of the intervention. The thematic analysis of all data was done using NVivo (QSR International). RESULTS: The analysis generated 2 main themes and 7 subthemes that reflect conflicting perspectives and greater acceptability of the intervention among the nurses over time owing to better familiarity with the increasingly mature technology. The first theme was the different experiences and perspectives of nurses and patients concerning barriers to using DA-GSD and comprised 4 subthemes: conflicting perspectives on the ability of patients to engage with DA-GSD and how to provide it, conflicting perspectives on DA-GSD as a threat to the nurse-patient relationship, functionality of DA-GSD and available technical equipment, and data security. The other theme was what influenced the increased acceptability of DA-GSD among the nurses over time and comprised 3 subthemes: a re-evaluation of the nurse-patient relationship; improved functionality of DA-GSD; and supervision, experience, patient feedback, and a global pandemic. CONCLUSIONS: The nurses experienced more barriers to DA-GSD than the patients did. Acceptance of the intervention increased over time among the nurses in keeping with the intervention's improved functionality, additional guidance, and positive experiences, combined with patients finding it useful. Our findings emphasize the importance of supporting and training nurses if new technologies are to be implemented successfully.

Person-specific evidence has the ability to mobilize relational capacity: A four-step grounded theory developed in people with long-term health conditions.

Person-specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self-determination method with people with various long-term health conditions. It explains the mechanisms of mobilizing relational capacity by including person-specific evidence in shared decision-making. Person-specific self-insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self-management challenges. This step paved the way for sharing these insights and challenges in a relationship with a supportive health professional, who could then rely on person-specific evidence instead of assumptions or a narrow disease perspective for shared decision-making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person-specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self-insights in daily life with other people, decreasing loneliness they experienced in self-management. Relational capacity, the core of the theory, is mobilized in both people with long-term health conditions and healthcare professionals. Further research on person-specific evidence and relational capacity in healthcare is recommended.

Multidimensional factors determine skill acquisition development in Guided Self-Determination: A qualitative study.

AIM: The aim of the study was to investigate nurses' skill acquisition in Guided Self-Determination according to the Dreyfus model of skill acquisition and Patricia Benner's studies based on the same model. BACKGROUND: Globally, person-centred care is acknowledged as an essential aspect of quality in health care. To succeed with person-centred care methods and skills are necessary. Guided Self-Determination is a person-centred method developed in the field of nursing. The method represents a new way of skill acquisition requiring knowledge of how skills are acquired, unfolded and best supported in Guided Self-Determination. DESIGN: Qualitative interview study. METHOD: From January 2019 to August 2019, 16 nurses were interviewed about their experiences of learning and using Guided Self-Determination in three different gynaecological settings: cancer, endometriosis and sexual abuse. The study was registered with the Danish Data Protection Agency (file no.: VD-2018-445, I-Suite no.: 6700). RESULTS: The spectrum in Guided Self-Determination acquisition skills ranged from following schematical procedures in a rigorous way to an extended understanding of exploring and supporting the person-centred concept. Two main themes were identified: Elements in the transition of knowledge from theory to practice and Aspects associated with Guided Self-Determination skill acquisition. CONCLUSIONS: Nurses practised Guided Self-Determination at different levels. Quantity of practising Guided Self-Determination was not the only aspect determining rapid progression. The Dreyfus model lacked several explanatory components of skill acquisition, such as personal dispositions, preferences, motivation, personal values and context.

About me as a person not only the disease - piloting Guided Self-Determination in an outpatient endometriosis setting.

INTRODUCTION: Endometriosis is a chronic disease affecting 5-10% of women in the reproductive age. Despite surgical and medical treatment, many women struggle with pain, infertility, sexual dysfunction, depression, distress and reduced workability, affecting their overall quality of life. The usual follow-up procedures may not support the women's self-management of this condition. Therefore, person-centred empowerment-based approaches are needed. AIM: To assess if the implementation of the Guided Self-Determination method targeted women with complex endometriosis appeared feasible and supported self-management. METHODS: Guided Self-Determination was offered to 10 out-patients with complex endometriosis. Each of the women had five conversations based on prefilled disease-specific reflection sheets. A qualitative evaluation was conducted in 2016-2017 covering semi-structured, telephone interviews and focus group interviews, which were analysed using thematic analysis. Additionally, we assessed if the women changed the self-reported questionnaires, Endometriosis Health Profile 30 and the Patient Activation Measure from before and after the conversations. RESULTS: We identified four themes: feeling alone with the disease; establishing a meaningful relationship with healthcare professionals in a traditional hospital setting; person-specific knowledge facilitated new behaviours and; accepting a chronic condition - the beginning of a process. All dimensions of the Endometriosis Health Profile 30 and the Patient Activation Measure appeared to improve at two weeks and so did almost all the dimensions of Endometriosis Health Profile 30 after 1 year. CONCLUSIONS: The implementation of the Guided Self-Determination method appeared feasible and the women developed self-management skills in relation to endometriosis and its symptoms. This was achieved by increasing insight into their needs and behaviours and gaining new knowledge about the disease itself. The before-and-after assessment suggested benefit of the intervention, but this should be further tested in a randomised trial.

Labeled as lucky: contradictions between what women and healthcare professionals experience regarding the need for help after the early stages of gynecological cancer.

PURPOSE: To explore how participants perceived a nurse-led, person-centered intervention, Guided Self-Determination Gynecological Cancer (GSD-GYN-C) and how participants felt it influenced the challenges they faced and their rehabilitation after gynecological cancer surgery. METHODS: Participants were invited from a previously conducted randomized trial where GSD-GYN-C improved physical quality of life in the intervention group. Ten semi-structured interviews were conducted, transcribed, and analyzed using thematic analysis. RESULTS: Three central themes were identified: (1) "labeled as the lucky ones," which describes a contrast between the women's perceived problems and the healthcare professionals' tendency to stress their luck in being treated early and cured with no particular problems in sight, leading to an unintended delay in their rehabilitation process; (2) "personal reflections pave the way for change," which shows how new problem-solving skills were mobilized when reflection sheets and dialogue on GSD-GYN-C provided new insight into their situation and the feeling of being taken seriously; and (3) "emerging relational competence," which describes the new skills the women developed in interacting with family, friends, colleagues, and healthcare professionals. CONCLUSIONS: As a supplement to usual care, GSD-GYN-C remedied a tendency among healthcare professionals to underestimate problems in the early stages of gynecological cancer, and GSD-GYN-C involved the women in their rehabilitation process characterized by active problem-solving in relationships with other people.

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.

A person-centered intervention targeting the psychosocial needs of gynecological cancer survivors: a randomized clinical trial.

PURPOSE: We investigated the effect of a person-centered intervention consisting of two to four nurse-led conversations using guided self-determination tailored to gynecologic cancer (GSD-GYN-C) on gynecological cancer survivors' quality of life (QOL), impact of cancer, distress, anxiety, depression, self-esteem, and self-reported ability to monitor and respond to symptoms of recurrence. METHODS: We randomly assigned 165 gynecological cancer survivors to usual care (UC) plus GSD-GYN-C or UC alone. Self-reported QOL-cancer survivor (QOL-CS) total score and subscale scores on physical, psychological, social, and spiritual well-being were assessed before randomization and at 3 and 9 months after randomization using t tests. Bonferroni and Pipper corrections were applied for multiple testing adjustments. RESULTS: At 9 months, the GSD-GYN-C plus UC group scored significantly higher on the QOL-CS total scale (P = 0.02) and on the QOL-CS physical well-being subscale (P = 0.01), compared to women receiving UC alone. After adjusting for baseline scores, only the difference in the physical well-being subscale was statistically significant. No other measured outcomes differed between the intervention and control groups after baseline adjustment. CONCLUSION: We observed higher physical well-being 9 months after randomization in the GSD-GYN-C group, as compared to women receiving usual care. IMPLICATIONS FOR CANCER SURVIVORS: The results suggest that the person-centered intervention GSD-GYN-C may improve physical well-being in gynecological cancer survivors. However, further testing is needed.

The psychosocial needs of gynaecological cancer survivors: A framework for the development of a complex intervention.

PURPOSE: To develop and pilot test an intervention targeting the women's psychosocial needs during the follow-up period after surgical treatment for gynaecological cancer. METHODS: The project consisted of four phases. Phase 1 involved development of an intervention on the basis of meetings with key healthcare professionals, a literature review and six semi-structured interviews with women who attended the existing follow-up program. The Guided Self-Determination (GSD) method developed in diabetes care was identified as an appropriate framework for the intervention. GSD consists of reflection sheets for patients and advanced professional communication skills. The GSD method was adapted to women in a follow-up program after gynaecologic cancer treatment (GSD-GYN-C). Phase 2 involved primary pilot testing of the intervention and the findings were used to modify the intervention in phase 3. This modification involved the development of additional reflection sheets and a fidelity assessment tool. A systematic training program was arranged for the GSD-GYN-C-nurses. Phase 4 involved secondary pilot testing where nurses and women confirmed the applicability of GSD-GYN-C and final adjustments were made. Selected measurements were tested for sensitivity during pilot testing. Data from phase 2 and 4 were also used to select the primary outcome and calculate power for a future randomized clinical trial (RCT). RESULTS: Pilot testing supported our hypothesis that GSD-GYN-C may be transferable and useful to survivors of gynaecological cancer. CONCLUSION: GSD-GYN-C was developed and validated and is now ready for evaluation in an RCT.

Deciding treatment for miscarriage--experiences of women and healthcare professionals.

INTRODUCTION: Women experiencing miscarriage are offered a choice of different treatments to terminate their wanted pregnancy at a time when they are often shocked and distressed. Women's and healthcare professionals' experiences of the decision-making process are not well described. We aimed to gain insight into this process and the circumstances that may affect it. METHOD: A qualitative study using a grounded theory approach. Data were obtained through semi-structured interviews with six women who had chosen and completed either surgical, medical or expectant treatment for miscarriage and five healthcare professionals involved in the decision-making at an emergency gynaecological department in Denmark. An inductive explorative method was chosen due to limited knowledge about the decision-making process, and a theoretical perspective was not applied until the final analysis. RESULTS: Despite information and pretreatment counselling, choice of treatment was often determined by unspoken emotional considerations, including fear of seeing the foetus or fear of anaesthesia. These considerations were not discussed during the decision-making process, which was a time when the women were under time pressure and experienced emotional distress. Healthcare professionals did not explore women's considerations for choosing a particular treatment and prioritised information differently. We found theory about coping and decision-making in stressful situations useful in increasing our understanding of the women's reactions. In relation to theory about informed consent, our findings suggest that women need more understanding of the treatments before making a decision. This study is limited due to a small sample size, but it generates important findings that need to be examined in a larger sample. CONCLUSION: Frequently, women did not use information provided about treatment pros and cons in their decision-making process. Because of unspoken thoughts, and women's needs being unexplored by healthcare professionals, information did not target women's needs and their reasoning remained unapparent.