Refining Mishel's Reconceptualized Uncertainty in Illness Theory: Explaining the Development of Uncertainty in Chronic Illness.

Background and Purpose: Mishel's Reconceptualized Uncertainty in Illness Theory describes the changed, more positive appraisal of uncertainty over time in a chronic disease. Therefore, Mishel referred to "probabilistic thinking" and "self-organization." The description of these concepts remained highly abstract, limiting the understanding of how change of uncertainty comes about. We aimed to elaborate on this gap and at refining the theory. Methods: We conducted a study consisting of three parts: (a) concept analyses of "probabilistic thinking" and "self-organization," (b) longitudinal qualitative study to investigate uncertainty experience over time, and (c) triangulation of (a) and (b) to develop theoretical propositions. Results: We developed five theoretical propositions in syllogistic form: (a) if persons experience uncertainty, they think probabilistically to assess the existentiality of potential consequences, (b) if they expect existential consequences, they experience uncertainty as a threat, (c) if the existentiality of uncertainty diminishes, then individuals accept uncertainty as an inherent part of illness, (d) if they accept uncertainty, they cognitively reframe it in a positive way in order to promote recovery, and (e) if persons reexperience uncertainty, they reassess the existentiality of potential consequences. Implications for Practice: We propose "health belief" as a mechanism driving "cognitive reframing" to explain the interrelation between uncertainty and a more positive experience. "Existential uncertainty" offers a new perspective on preventing a change in uncertainty experience. The new concepts can provide guidance to take measures to reduce existential uncertainty and promote health beliefs to change the experience of uncertainty from a negative to a more positive one.

From existential uncertainty to a new mindset promoting recovery: Exploring the development of uncertainty experience in women with vulvar neoplasia - A qualitative longitudinal study.

BACKGROUND: Women with vulvar neoplasia continue to experience uncertainty up to six months post-surgery. Uncertainty in illness is considered a significant psychosocial stressor, that negatively influences symptom distress, self-management strategies and quality of life. According to the Reconceptualized Uncertainty in Illness Theory, the appraisal of uncertainty changes positively over time in chronic illness. We aimed at exploring whether and how the experience of uncertainty develops in women with vulvar neoplasia. METHODS: We selected a purposive sample of seven women diagnosed with vulvar neoplasia in four Swiss and one Austrian women's clinic. By means of a qualitative longitudinal study, we conducted 30 individual interviews at five points of time during one year after diagnosis. We applied Saldaña's analytical questions for longitudinal qualitative research. RESULTS: First, participants experienced uncertainty as an existential threat, then an inherent part of their illness, and finally a certainty. Women initially associated the existential threat with a high risk for suffering from severe health deteriorations. Participants that could reduce their individually assessed risk by adopting health promoting behaviors, accepted the remaining uncertainty. From now on they reframed uncertainty into a certainty. This new mindset was based on a belief of promoting recovery and reducing the risk of recurrence. CONCLUSIONS: The long-lasting and oscillating nature of uncertainty should receive attention in supportive oncology care. Uncertainty concerning existential issues is of special importance since it can inhibit a positive development of uncertainty experience.

[Voluntary abstinence from food and fluid. The relatives' perspective: An integrative review]. / Freiwilliger Verzicht auf Nahrung und Flüssigkeit: Die Angehörigenperspektive.

Voluntary abstinence from food and fluid. The relatives' perspective: An integrative review Abstract. Background: Unbearable states of suffering can cause a premature wish to die. Voluntary stopping of eating and drinking (VSED) offers a way to autonomously realize this wish. Relatives play a significant role in the process of realizing VESD. So far, it is unclear how relatives experience the supporting process. Aim: This review intends to systematically record experiences of accompanying relatives. Method: Within the framework of an integrative review, we conducted research in MEDLINE®, CINAHL® and PsychINFO®, as well as supplementary research. The selection was based on defined inclusion and exclusion criteria. For the synthesis, we used a thematic model. Results: From the four included studies, it emerged that the accompanying relatives accepted the family members' wish to die. They defended the realization of this wish with responsibility and advocacy until the death of the person wishing to die. As a result of their caring commitment, they neglected their own needs. Most relatives assessed the accompaniment as peaceful and dignified. Conclusion: Accompanying the VSED process represents an emotional tightrope walk with unfamiliar challenges for relatives. The results can contribute to a deeper understanding of relatives' needs. In this way, the findings can stimulate the derivation of suitable support offers.

Financial toxicity among cancer survivors: a conceptual model based on a feedback perspective.

PURPOSE: Experiencing financial toxicity following a cancer diagnosis is a circular and complex process. We investigate the circular causal mechanisms that either reinforce or balance financial toxicity dynamics. METHODS: We conducted a literature review, expert interviews, a participatory modeling process, and exploratory interviews with N = 11 adults with cancer living in Switzerland. We sampled participants purposively based on health-related and sociodemographic characteristics. RESULTS: We describe a conceptual model based on the triangulation of cancer survivor narratives, expert perspectives, and a literature review. This model distinguishes between the reinforcing and balancing feedback loops that drive the dynamics of financial toxicity. It includes the topics "Coping with cancer and employment," "Coping with limited economic resources," and "Maintaining care resources while facing economic pressure." For each topic, we identify a necessary condition for cancer survivors to avoid reinforcing financial toxicity. CONCLUSIONS: The results allow us to reconstruct participant narratives regarding cancer-related financial toxicity. Based on comparison with scientific literature from Western Europe and North America, we hypothesize the validity of the model beyond the population covered by the sample. The results highlight the importance of screening for the risk of financial toxicity in the clinical context and individual risk and resource assessment in social counseling. IMPLICATIONS FOR CANCER SURVIVORS: These results can raise cancer survivors' awareness of risks related to financial toxicity and strengthen their resources for coping with financial burden successfully.

Pharmacists' clinical roles and activities in inpatient hospice and palliative care: a scoping review.

BACKGROUND: Pharmacists contribute to medication safety by providing their services in various settings. However, standardized definitions of the role of pharmacists in hospice and palliative care (HPC) are lacking. AIM: The purpose of this scoping review was to provide an overview of the evidence on the role of pharmacists and to map clinical activities in inpatient HPC. METHOD: We performed a scoping review according to the PRISMA-ScR extension in CINAHL, Embase, and PubMed. We used the American Society of Hospital Pharmacists (ASHP) Guidelines on the Pharmacist's Role in Palliative and Hospice Care as a framework for standardized categorization of the identified roles and clinical activities. RESULTS: After screening 635 records (published after January 1st, 2000), the scoping review yielded 23 publications reporting various pharmacy services in HPC. The articles addressed the five main categories in the following descending order: 'Medication order review and reconciliation', 'Medication counseling, education and training', 'Administrative Roles', 'Direct patient care', and 'Education and scholarship'. A total of 172 entries were mapped to the subcategories that were added to the main categories. CONCLUSION: This scoping review identified a variety of pharmacists' roles and clinical activities. The gathered evidence will help to establish and define the role of pharmacists in inpatient hospice and palliative care.

Effectiveness and content components of nursing counselling interventions on self- and symptom management of patients in oncology rehabilitation-A systematic review.

AIM: To synthesize the evidence on the effectiveness and content components of nurse-led counselling interventions on the self-and symptom management of patients in oncology rehabilitation. DESIGN: A systematic review METHODS: The electronic databases MEDLINE, CINAHL, Cochrane Library and Grey Literature were searched for randomized controlled trials or quasi-experimental trials. Following data extraction, a quality assessment was performed using the Joanna Briggs Institute checklist and the Cochrane risk-of-bias tool. The findings were synthesized in narrative and tabular formats. RESULTS: Seven studies were included in the analysis. Two RCTs measured a statistically significant increase in self-efficacy compared to the control group, and one quasi-experimental study showed a statistically significant increase compared to the pre-intervention period. Symptom anxiety was statistically significantly reduced in two RCTs and one quasi-experimental trial. Self-management similarities in the components of the interventions were seen as identifying patients' concerns, setting goals, developing action plans and evaluating the goals and giving patient-tailored information.

Prescription Trends in Hospice Care: A Longitudinal Retrospective and Descriptive Medication Analysis.

BACKGROUND: In hospice and palliative care, drug therapy is essential for symptom control. However, drug regimens are complex and prone to drug-related problems. Drug regimens must be simplified to improve quality of life and reduce risks associated with drug-related problems, particularly at end-of-life. To support clinical guidance towards a safe and effective drug therapy in hospice care, it is important to understand prescription trends. OBJECTIVES: To explore prescription trends and describe changes to drug regimens in inpatient hospice care. DESIGN: We performed a retrospective longitudinal and descriptive analysis of prescriptions for regular and as-needed (PRN) medication at three timepoints in deceased patients of one Swiss hospice. SETTING/SUBJECTS: Prescription records of all patients (≥ 18 years) with an inpatient stay of three days and longer (admission and time of death in 2020) were considered eligible for inclusion. RESULTS: Prescription records of 58 inpatients (average age 71.7 ± 12.8 [37-95] years) were analyzed. The medication analysis showed that polypharmacy prevalence decreased from 74.1% at admission to 13.8% on the day of death. For regular medication, overall numbers of prescriptions decreased over the patient stay while PRN medication decreased after the first consultation by the attending physician and increased slightly towards death. CONCLUSIONS: Prescription records at admission revealed high initial rates of polypharmacy that were reduced steadily until time of death. These findings emphasize the importance of deprescribing at end-of-life and suggest pursuing further research on the contribution of clinical guidance towards optimizing drug therapy and deprescribing in inpatient hospice care.

Preparing students to deal with the consequences of the workforce shortage among health professionals: a qualitative approach.

BACKGROUND: Healthcare is facing a shortage of qualified healthcare professionals. The pandemic has brought to light the fragile balance that affects all healthcare systems. Governments have realized that these systems and the professionals working in them need support at different levels to strengthen the retention of the workforce. Health professionals' education can play an important role in ensuring that new generations of workers have sound personal and professional competencies to successfully face the challenges of professional practice. These challenges are described in the literature, but the extent to which they are considered in health professionals' education is less clear. METHODS: This qualitative study compares the professional challenges and educational needs described in the literature with the current curricula for health professionals offered in Switzerland. Data were collected nationally through focus group interviews with 65% of Switzerland's directors of bachelor's and master's programs of health professions (nursing, physiotherapy, occupational therapy, midwifery, nutrition and dietetics, osteopathy, radiologic medical imaging technology, health promotion and prevention, and health sciences). The data attained were analyzed using knowledge mapping. RESULTS: The results reveal a gap among education programs with regard to occupational health promotion and cultural diversity. Both topics are taught with a sole focus on patients, and students are expected to adopt similar strategies for their health promotion and stress management. Physicians are insufficiently involved in interprofessional education. The programs fail to enhance health professionals' political, economic and digital competencies. CONCLUSION: The results of this study offer clear guidance about what topics need to be integrated into curricula to improve health professionals' well-being at work and their preparedness to face daily professional challenges.

Subcutaneous Drugs and Off-label Use in Hospice and Palliative Care: A Scoping Review.

BACKGROUND: Subcutaneous drug administration is an interesting approach for symptom control in hospice and palliative care. However, most drugs have no marketing authorization for subcutaneous administration and are therefore used off-label. In order to meet the requirements of a safe and effective drug therapy, especially in highly vulnerable patients, it is essential to investigate the scope of evidence of these common practices. OBJECTIVES: The purpose of this scoping review was to provide an overview of available data on the tolerability and/or effectiveness of subcutaneously administered and off-label used drugs. METHOD: We performed a scoping review according to the PRISMA extension to identify data available on the tolerability and/or effectiveness of 17 predefined drugs that are commonly administered subcutaneously in Swiss hospices and hospice-like institutions and that have no marketing authorization (off-label use). RESULTS: The scoping review identified 57 studies with most data available on their tolerability (68% local, 54% systemic), clinical effects (82%), details on dosage (96%) and routes of application (100%). Information on pharmacokinetic properties was mostly missing and only available for fentanyl, levetiracetam, midazolam, and ondansetron. For seven drugs, less than five articles were identified and no studies on codeine or clonazepam were available. CONCLUSION: This work provides an overview of current evidence on subcutaneous and off-label used drugs in hospice and palliative care. Although both are common practices, evidence on tolerability and effectiveness, particularly pharmacokinetic data, is limited and the identified information gaps need to be closed. This work establishes a basis for further research in this area.

Developing a theoretical definition of self-organization: A principle-based concept analysis in the context of uncertainty in chronic illness.

AIM: To develop a theoretical definition of self-organization to increase the understanding of the Reconceptualized Uncertainty in Illness Theory (RUIT). BACKGROUND: Mishel described the change of the uncertainty appraisal over time in people with a chronic illness by means of the RUIT. Therefore, she introduced the concept of self-organization. However, its meaning is difficult to comprehend because its descriptions remained highly abstract. DESIGN: A principle-based concept analysis. DATA SOURCE: Entries of lexicons and journal publications, explicitly or implicitly addressing self-organization in the context of any social phenomenon. REVIEW METHODS: We conducted a conceptually driven literature search in lexicons and four databases and performed citation tracking. RESULTS: Self-organization stands for a transition between psychological instability and psychological adjustment. It is conditioned by illness-related obstacles or uncertainties that are perceived as life-threatening. This adaptation process shows overlaps with cognitive reframing and is promoted by time, resilience, social support, and positive development of the disease. It leads to empowerment and a new perspective of life and uncertainty. CONCLUSIONS: We enhanced the understanding of the RUIT by developing a theoretical definition of self-organization on a lower level of abstraction and by proposing a new approximation for the operationalization by means of cognitive reframing.

[Promoting physical activity in women during breast cancer therapy: A mixed methods evaluation of a nursing counselling intervention]. / Bewegungsförderung bei Frauen während der Brustkrebstherapie.

Promoting physical activity in women during breast cancer therapy: A mixed methods evaluation of a nursing counselling intervention Abstract. Background: Physical activity is associated with improved quality of life in women during breast cancer treatment. However, how physical activity behaviour of patients changes in the first months after the start of the treatment and what role nursing counselling can play has not yet been sufficiently investigated. Aim: To observe differences in physical activity behaviour in women with breast cancer at the time of the initiation of the therapy and six months later, and to explore patients' and health professionals' perspective on a nursing counselling intervention on physical activity. Methods: A mixed-methods evaluation was conducted. In the quantitative part, the physical activity behaviour was assessed at two time points (t0 and t1) with the SQUASH instrument (30-2Wendel-Vos, 2003). In the qualitative part, one focus group interview was conducted with patients and health professionals separately. The quantitative data were analyzed using descriptive and inductive statistics. The qualitative data were analyzed thematically. Results: The sample (N = 47) showed a slight, but not significant increase in the extent of physical activity comparing t1 with t0. A statistically significant increase in the amount of exercise between t0 and t1 was only found in the category "work" (p = 0,002). The central theme of the women was that they felt encouraged by the nursing counselling intervention to "do something for themselves". For the health professionals, in the context of counselling it was important that they themselves were convinced of the importance of physical activity. Conclusions: The integration of physical activity into everyday life is a challenge for women with breast cancer during therapy. A counselling intervention is perceived as supportive but could have a more lasting effect through a longer-term physical activity programme.

Probabilistic Thinking: A Principle-Based Concept Analysis in the Context of Uncertainty in Chronic Illness.

BACKGROUND AND PURPOSE: The Reconceptualized Uncertainty in Illness Theory (RUIT) includes the concept of "probabilistic thinking" intending to explain the positive reappraisal of uncertainty in chronic illness. However, the description of the concept is vague, thereby limiting the understanding of the theory. Thus, the aim was to develop a theoretical definition of probabilistic thinking in order to increase the explanatory value of RUIT. METHODS: We conducted a principle-based concept analysis by means of a conceptually driven literature search. Methods consisted of database, dictionary, lexicon, and free web searching as well as citation tracking. We analyzed the concept in terms of (a) epistemology, (b) pragmatics, (c) logic, and (d) linguistics. RESULTS: The final data set included 27 publications, 14 of them from nursing. (a) Probabilistic thinking is a coping strategy to handle uncertainty. It involves a focus on either possibilities (in nursing) or probabilities (in other disciplines). (b) There is a lack of operationalization in nursing, though three measurements focusing the handling of probabilities are offered in psychology. (c) Nursing authors interpreting probabilistic thinking as accepted uncertainty lacked logical appropriateness, since probability negotiates uncertainty. (d) Probabilistic thinking is used synonymously with positive thinking and probabilistic reasoning. IMPLICATIONS FOR PRACTICE: Nurses working with chronically ill patients should consider the findings for the application of RUIT. They should recognize whether uncertainty is perceived as a danger and encourage probabilistic thinking. Efforts are necessary to achieve a common language between nursing and other disciplines in order to avoid misunderstandings in clinical practice and research.

Die Rolle von Pflegefachpersonen in der onkologischen Rehabilitation.

Nurse's role in oncological rehabilitation - A scoping review Abstract. Background: For people with cancer the offer for inpatient or outpatient oncological rehabilitation is more and more increasing. Oncological rehabilitation has an interdisciplinary approach to prepare people with cancer for their life at home. Nurses are part of the interdisciplinary team, but little is known about their special role in this setting. Objective: The aim of this study is to identify the role of nurses and their functions in cancer rehabilitation. Methods: A scoping review was conducted. A literature search was conducted in MEDLINE via PubMed and CINAHL, Google Scholar and in reference lists. There was no limitation of publication period. After evaluation of the included publications a thematic analysis was undertaken. Results: All in all, 7 publications (1 qualitative study, 1 editorial book, 1 white paper, 1 article and 3 literature reviews) were included. Through thematic analysis 3 main topics were identified: nurse's role as emotional and psychological support, coach and part of the interdisciplinary team. In addition to general care, they promote self-management, advise and train, carry out symptom management and take on a coordinative function. Conclusion: This scoping review offers a first overview about the role of nurses in oncological rehabilitation. The focus is on preparation of cancer survivors for their new and changed life.

The effect of written information and counselling by an advanced practice nurse on resilience in women with vulvar neoplasia six months after surgical treatment and the influence of social support, recurrence, and age: a secondary analysis of a multicenter randomized controlled trial, WOMAN-PRO II.

BACKGROUND: Women with vulvar neoplasia often complain about physical and psychological distress after surgical treatment. Lack of information and support can influence resilience. Whether an information-related intervention through an advanced practice nurse supports resilience and which other factors affect resilience in women with vulvar neoplasia has never been investigated. METHODS: The aims of this study were (a) to analyse whether counselling based on the WOMAN-PRO II program causes a significant improvement in the resilience scores of women with vulvar neoplasia compared to written information and (b) to identify the potential predictors of resilience. A randomized controlled trial was conducted in women with vulvar neoplasia (n = 49) 6 months after surgical treatment in four Swiss hospitals and one Austrian hospital. Analyses of resilience and its predictors were performed using a linear mixed model. RESULTS: Thirty-six women (intervention I, n = 8; intervention II, n = 28) completed the randomized controlled trial. In total, 13 women (26.5%) dropped out of the trial. The resilience score did not differ significantly between the two interventions three and six months after randomisation (p = 0.759). Age (b = .04, p = 0.001), social support (b = .28, p = 0.009), counselling time (b = .03, p = 0.018) and local recurrence (b = -.56, p = 0.009) were identified as significant predictors of resilience in the linear mixed model analyses. CONCLUSION: The results indicate that the WOMAN-PRO II program as single intervention does not cause a significant change in the resilience scores of women with vulvar neoplasia 6 months after surgery. Predictors that promote or minimise resilience have been identified and should be considered when developing resilience programs for women with vulvar neoplasia. A repetition of the study with a larger sample size is recommended. TRIAL REGISTRATION: The WOMAN-PRO II program was registered in ClinicalTrials.gov NCT01986725 on 18 November 2013.

[The Advanced Practice Nurse (APN) in gynaecological oncology - development of an evidence-based concept]. / Die Advanced Practice Nurse (APN) in der gynäkologischen Onkologie.

The Advanced Practice Nurse (APN) in gynaecological oncology - development of an evidence-based concept Abstract. Background: The role of an Advanced Practice Nurse (APN) is suggested to provide supportive care for women with gynaecological cancer throughout the caring process. In Austria and Switzerland, APN development is at its beginning and there is a lack of systematically developed role concepts. AIM: The aim of this study was to develop relevant contents of an evidence-based APN concept for gynaecological oncology in Austria and Switzerland. METHOD: The concept was developed by using a matrix elaborated on the basis of the PEPPA plus framework, and complemented by elements of the Nursing Role Effectiveness Model (NREM). The matrix synthesised data from four previous conducted studies. Thirteen experts from nursing and medicine validated the concept. RESULTS: Divided into structure, process and outcome criteria, the concept describes main contents of an APN in gynaecological oncology within the Austrian and Swiss healthcare context. Further, relationships between structure-process, structure-outcome and process-outcome are described. CONCLUSIONS: The concept developed in this study provides a basis for (1) the future development of an APN role description in gynaecologic oncology on an institutional level and (2) curriculum development of corresponding degree programs. Due to the common basis, a harmonisation of APN in the Austrian and Swiss context might be supported.

Effectiveness, structure, and content of nurse counseling in gynecologic oncology: a systematic review.

BACKGROUND: Gynecological pre-cancer and gynecological cancers are considerable diseases in women throughout the world. The disease and treatment lead to numerous biopsychosocial issues. To improve the outcomes of affected women, several counseling interventions have been tested thus far in nursing research. These interventions target different endpoints and are composed of various structural and content components. The purpose of this research was to systematically review the effectiveness of nurse counseling on any patient outcomes tested so far in gynecologic oncology before, during and after treatment and to explore structure and content components. METHODS: Experimental, quasi-experimental, and pre-experimental studies assessing the effectiveness of nurse counseling in women with gynecological neoplasia were searched for in PubMed®, CINAHL®, PsychINFO®, Cochrane®, and EMBASE®. Reference lists were hand-searched and relevant authors were contacted. Moreover, the evidence level and methodological quality of the included studies were assessed. Afterwards, the effect of nurse counseling on each identified patient outcome was narratively analyzed. To identify the structural and content components of the included interventions, a structured content analysis was performed. Finally, it was determined which components were associated with favorable outcomes within the included studies. RESULTS: Seven experimental and three pre-experimental studies, reporting the effects of 11 interventions on a total of 588 participants, were eligible. No study investigated women with pre-cancer. Three studies had a high, five a moderate, and two a low methodological quality. Positive effects were found on quality of life, symptoms, and healthcare utilization. Eight structural components and four content components composed of various sub-components were identified and linked to specific effects. CONCLUSIONS: The current evidence base is fragmented and inconsistent. More well-designed, large-scale studies including women with pre-cancer are warranted. Most convincing evidence indicates that nurse counseling can improve symptom distress. Components associated with the most trustworthy effects include nurses with an academic education; repeated and individual consultations during and after active treatment; structured, tailored, interdisciplinary orientated, and theoretically based counseling concepts; specific materials; comprehensive symptom management; and utilization of healthcare services. Healthcare providers and researchers can use the findings of this review for the systematic development of nurse counseling in gynecologic oncology.

"Promoting continuity of care"-Specialist nurses' role experiences in gynaecological oncology: A qualitative study.

AIMS AND OBJECTIVES: To investigate the experiences of specialist nurses in Switzerland concerning their role of caring for women with gynaecological cancer. BACKGROUND: Women with gynaecological cancer often face complex situations, which require an integrative and quality-assured approach by the healthcare system. Specialist nurses can play an important role in supporting these patients. However, in countries where the role of specialist nurses is at a developmental stage, their role lacks clarity. DESIGN: A qualitative descriptive design was chosen to gain insights into experiences of specialist nurses who care for women with gynaecological cancer. METHODS: We conducted three focus groups with 12 specialist nurses to access their experiences with regard to their role. Thematic qualitative text analysis was used to interpret the results. RESULTS: Divided into six main themes, the study results describe specialist nurses' (1) current and (2) aspired role. (A) Counselling, (B) guidance, (C) key contact person and (D) team support are relevant themes in their current role. The themes (E) provision of resources and (F) extended knowledge are relevant to their aspired role. Within their current and aspired roles, the specialist nurses' scope of practice is defined as "promoting continuity of care." CONCLUSIONS: The results indicate aspects of specialist nurses' current and aspired roles. Detailed role descriptions and legal requirements are necessary to further support nurses towards an extended and specialised practice. In the context of gynaecological cancer survivors, services should be developed, where specialist nurses can play an important role in providing continuous care. RELEVANCE TO CLINICAL PRACTICE: To support implementation of specialist nursing in clinical practice, resources have to be mobilised and role descriptions should be provided. By creating an appropriate framework, the specialist nurse can turn into an important support for women with gynaecological cancer, in addition to current healthcare services.

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.