Exploring Factors Associated With Family Caregivers' Preparedness to Care for an Older Family Member Together With Home Care Nurses: An Analysis in a Swiss Urban Area.

INTRODUCTION: Home-dwelling older people with chronic diseases often need the support of informal and formal caregivers in order to continue living at home. Family members, however, need to be willing and prepared for caregiving together with home care nurses. OBJECTIVES: The purpose of this study was to explore factors associated with family caregivers' preparedness to care for older home-dwelling adults who also receive home care nursing services. METHODS: For this cross-sectional correlational study, a structured questionnaire was sent to family caregivers of adults aged 65 years or older receiving services from a community care agency. A total of 243 participants returned the questionnaire, of which 199 could be analyzed. RESULTS: The stepwise backward regression model explained 29.1% of the variance of family caregivers' preparedness. Mutuality was the most strongly associated factor with family caregivers' preparedness whereas professional involvement of family caregiver in care process was important as well. Care intensity showed no significant impact. CONCLUSION: Nurses should support the whole family emotionally, and appreciate, admire, reinforce, and respect the caregivers' situation. Home care nurses need to invest in helping families to find solutions, to strengthen their relationships between family members and the older person dwelling at home.

Eine Frage des Vertrauens - Grounded Theory-Studie zum Alltagserleben HIV-positiver und an AIDS erkrankter Menschen.

A matter of trust - A grounded theory study on the everyday experience of people living with HIV / AIDS Abstract. Background: Provided that the antiretroviral therapy is taken correctly, HIV / AIDS has become a chronic disease allowing for a nearly normal daily life, which is still, however, characterized by specific challenges. Aim: The aim of this study was to explore how HIV / AIDS patients experience and manage their everyday life, against the backdrop of chronification. Method: A qualitative grounded theory approach according to Corbin and Strauss; problem-centered interviews with 18 participants suffering from HIV / AIDS; analysis of data was performed by applying coding strategies and supported by MAXQDA. Results: The present study shows that "trust" is of crucial significance to HIV / AIDS patients in their private, occupational and healthcare environments, where discrimination, stigma and exclusion still occur. The revelation of the infection status represents a particular challenge. We identified three key patterns of trust: evolved trust, controlled trust and distrust / loss of trust. Depending on these patterns, patients approach their condition in strikingly different ways, with apparent consequences on their quality of life. Conclusion: The here established trust patterns provide a theoretical foundation that may serve as a hub for improving support and care of people suffering from HIV / AIDS. Moreover, reducing the social stigma and discrimination faced by these individuals, primarily in the healthcare system, is paramount for the future handling of the disease.

Family physicians' perspective on voluntary stopping of eating and drinking: a cross-sectional study.

OBJECTIVE: We aimed to determine how often patients who choose voluntary stopping of eating and drinking (VSED) are accompanied by Swiss family physicians, how physicians classify this process, and physicians' attitudes and professional stance toward VSED. METHODS: We conducted a cross-sectional study between August 2017 and July 2018 among 751 practicing family physicians in Switzerland (response rate 74%; 70.7% men; average age 58 (±9) years). We used a standardized evidence-based questionnaire for the survey. RESULTS: VSED is well-known among family physicians (81.9%), and more than one-third (42.8%) had accompanied at least one patient during VSED. In 2017, 1.1% of all deaths that occurred in Swiss nursing homes or in a private home were owing to VSED. This phenomenon was classified as a natural dying process (59.3%), passive euthanasia (32.0%), or suicide (5.3%). CONCLUSIONS: Although about one in three Swiss family physicians have accompanied a person during VSED, family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process. Further training and development of practice recommendations are needed to achieve more standardized accompaniment of VSED.International Registered Report Identifier: DERR1-10.2196/10358.

Experiences of relatives with outpatient palliative care: a cross-sectional study.

AIM: The authors aimed to evaluate the experiences of the relatives of dying people, both in regard to benefits and special needs, when supported by a mobile palliative care bridging service (MPCBS), which exists to enable dying people to stay at home and to support patients' relatives. DESIGN: A cross-sectional survey. METHODS: A standardised survey was performed, asking 106 relatives of dying people about their experiences with the MPCBS (response rate=47.3%). Descriptive statistics were analysed using SPSS 23. FINDINGS: Many relatives (62.5%) reported that their dying relations when discharged from a facility to stay at home were not symptom-free. The MPCBS helped relatives maintain home care, and this was reported to be helpful. Support provided by the MPCBS made it easier for 77.6% of relatives to adjust care as soon as situations changed, and helped ensure that symptoms could be better controlled, at least for 68.2% of relatives. Younger relatives felt more encouraged by the MPCBS to care for their relatives dying at home.

The associations of palliative care experts regarding food refusal: A cross-sectional study with an open question evaluated by triangulation analysis.

INTRODUCTION: Health professionals in oncologic and palliative care settings are often faced with the problem that patients stop eating and drinking. While the causes of food refusal are very different, the result is often malnutrition, which is linked to health comorbidities and a high mortality rate. However, the professionals lack the time and knowledge to clarify the cause for each patient. What associations do health professionals have when faced with food refusal? OBJECTIVE: To investigate the associations that health professionals in oncological and palliative settings have about denied eating behavior. METHODS: A cross-sectional study, starting with an open question focusing professionals' associations regarding food refusal. The results were inductively analyzed, whereby generic categories were developed. Subsequently, the categories were transformed into quantitative data to calculate the relationships between the categories. RESULTS: A total of 350 out of 2000 participants completed the survey, resulting in a response rate of 17.5%. Food refusal is primarily associated with physical and ethical aspects and with end-of-life. Half of the participants frequently find that patients refuse to eat. The attitudes show that the autonomy of the patient is the highest good and is to be respected. Even in the case of patients with limited decision-making capacity, the refusal to eat is acceptable. CONCLUSION: Clarifying the cause of food refusal requires a great deal of knowledge and is strongly influenced by the associations of health professionals. While the associations have very negative connotations, information and training is needed to make professionals aware of this and to change their associations. With this knowledge and in an interprofessional cooperation, mis-labelling of patient settings can be avoided and fears can be reduced.

Psychometric evaluation of the German version of a social support scale of FAFHES (Family Functioning, Family Health and Social Support).

BACKGROUND: Family members often need to be supported in informal care of the elderly and desire to be involved into care planning and decision-making. Valid and reliable instruments are needed to measure how family members perceive the care and support they receive from nurses for older family members living at home. AIM: The purpose of this study was to translate the 20-item social support scale of the Family Functioning, Family Health and Social Support (FAFHES) questionnaire from English to German and test the validity and reliability of the scale among Swiss-German-speaking family caregivers of home-dwelling elderly people who receive home healthcare services. METHODS: A cross-sectional study was conducted to test the empirical and psychometric properties of the translated and culturally adapted version of the social support questionnaire. A factor analysis with the principal component analysis PCA was used to test construct validity. The internal consistency of items was measured with the Cronbach`s alpha coefficient. RESULTS: After a rigorous translation process the original 20-item questionnaire was adapted into a 19-item version and tested with family caregivers (n = 207) of home-dwelling elderly. Psychometric testing of the German version of the social support questionnaire revealed that the three factors - affirmation, affect and concrete aid - were congruent with the original questionnaire. The accounted variance was 79.5% and the internal consistency determined by the Cronbach's alpha was 0.973. CONCLUSION: The German version of the social support scale of the FAFHES questionnaire is a valid and reliable instrument to assess family perceived support on three dimensions - affirmation, affect and concrete aid - received from nursing professionals. The questionnaire should be tested further in other German-speaking populations.

Long-term care nurses' attitudes and the incidence of voluntary stopping of eating and drinking: A cross-sectional study.

AIMS: To assess the incidence of voluntary stopping of eating and drinking (VSED) in long-term care and to gain insights into the attitudes of long-term care nurses about the VSED. DESIGN: A cross-sectional study. METHODS: Heads of Swiss nursing homes (535; 34%) answered the Online-Survey between June - October 2017, which was evaluated using descriptive data analysis. RESULTS: The incidence of patients who died in Swiss nursing homes by voluntarily stopping eating and drinking is 1.7% and 67.5% of participants consider this phenomenon highly relevant in their daily work. Most participants (64.2%) rate VSED as a natural death accompanied by health professionals and patients are also granted the right to care (91.9%). This phenomenon is expected by the participants less at a young age and more in old age. CONCLUSION: Participants' overall views on the VSED are very positive, whereas it is assumed that VSED is a phenomenon of old age. Professionals still lack sufficient knowledge about this phenomenon, which could be clarified through training. IMPACT: Voluntary stopping of eating and drinking is much discussed interprofessional, but there is a lack of knowledge on how this is perceived in the context of long-term care and about the incidence of the phenomenon. Voluntary stopping of eating and drinking is rare but noticeable end-of-life practises that is considered by professionals to be mainly dignified and peaceful, although moral concerns make it difficult to accompany. These findings call on long-term care institutions to discuss VSED as an end-of-life practice. Positioning on the issue provides clarity for staff and patients and promotes to develop standardized care. International Registered Report Identifier (IRRID): DERR1-10.2196/10358.

Development of an Early Warning System to Prevent Crises in the Palliative Home Care Setting of Patients and Their Informal Caregivers: Protocol for a Mixed Method Study.

BACKGROUND: Most people wish to die at home, but most people in Switzerland die in hospitals or nursing homes. Family caregivers often offer support so patients with palliative care needs can stay at home for as long as possible. However, crises and unplanned hospital admissions often occur in this setting because of family caregiver strain and symptom severity in patients. The so-called smart devices such as wearables or smartphones offer the opportunity to continuously monitor certain parameters and recording symptom deteriorations. By providing professionals with this information in a timely manner, crises in the home could be avoided. OBJECTIVE: The aim of this interdisciplinary study is to explore the symptom burden of people with palliative care needs who are cared for at home and to understand the development of crises in the home care setting. On the basis of the findings from this study, we will develop an early warning system to stabilize the home care situation and to prevent critical events from happening, thereby reducing avoidable hospitalizations. METHODS: A mixed method study is being conducted consisting of 4 main consecutive phases: (1) developing the monitoring system; (2) pretesting the system and adapting it to user needs; (3) conducting the study in the palliative home care setting with approximately 40 patients; and (4) distinguishing symptom patterns from the collected data specific to crisis emergence, followed by the development of an early warning system to prevent such crises. In study phase 3, each patient will receive an upper arm sensor and a symptom diary to assess symptom burden related to patients and family caregivers. A within-case analysis will be conducted for each patient's situation followed by a cross-case comparison to identify certain symptom patterns that may predict symptom deterioration (study phase 4). RESULTS: The collaboration with the local mobile palliative care team for participant recruitment and data collection has been established. Recruitment is forthcoming. CONCLUSIONS: We expect the findings of this study to provide holistic insight into symptom burden and the well-being of patients with palliative care needs and of their family caregivers. This information will be used to develop an early warning system to avoid the occurrence of potential crises, thereby improving palliative care provision at home. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):  PRR1-10.2196/13933.

Caregiver exposure to critical events and distress in home-based palliative care in Germany a cross-sectional study using the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) scale.

BACKGROUND: Lay family caregivers of patients receiving palliative care often confront stressful situations in the care of their loved ones. This is particularly true for families in the home-based palliative care settings, where the family caregivers are responsible for a substantial amount of the patient's care. Yet, to our knowledge, no study to date has examined the family caregivers' exposure to critical events and distress with home-based palliative care has been reported from Germany. Therefore, we attempt to assess family caregiver exposure to the dying patient's critical health events and relate that to the caregiver's own psychological distress to examine associations with general health within a home-based palliative care situation in Germany. METHODS: A cross-sectional study was conducted among 106 family caregivers with home-based palliative care in the Federal State of North Rhine Westphalia, Germany. We administered the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale. Descriptive statistics and linear regression models relating general health (SF-36) were used to analyze the data. RESULTS: The frequency of the caregiver's exposure, or witness of, critical health events of the patient ranged from 95.2% "pain/discomfort" to 20.8% "family caregiver thought patient was dead". The highest distress scores assessing fear and helpfulness were associated with "family caregiver felt patient had enough'" and "family caregiver thought patient was dead". Linear regression analyses revealed significant inverse associations between SCARED critical health event exposure frequency (beta = .408, p = .025) and total score (beta = .377, p = .007) with general health in family caregivers. CONCLUSIONS: Family caregivers with home-based palliative care in Germany frequently experience exposure to a large number of critical health events in caring for their family members who are terminally ill. These exposures are associated with the family caregiver's degree of fear and helplessness and are associated with their worse general health. Thus the SCARED Scale, which is brief and easy to administer, appears able to identify these potentially upsetting critical health events among family caregivers of palliative care patients receiving care at home. Because it identified commonly encountered critical events in these patients and related them to adverse general health of family caregivers, the SCARED may add to clinically useful screens to identify family caregivers who may be struggling.

Development of a Questionnaire to Determine Incidence and Attitudes to "Voluntary Stopping of Eating and Drinking".

BACKGROUND: "Voluntary stopping of eating and drinking" (VSED) is an option to hasten death at the end of life. There are no data available about incidence of either the explicit VSED or implicit (V)SED nor information about experiences and attitudes of health professionals about VSED in Switzerland. AIMS: To develop, test, and translate a standardized questionnaire that measures the incidence of VSED, and physicians' and nurses' experiences about explicit VSED and implicit (V)SED. METHODS: The development of the questionnaire was based on a systematic search, which were updated in 2016. The questionnaire was tested by palliative care specialists using standard pretest and content validity index (CVI). Subsequently, a forward/backward translation was made. RESULTS: The questionnaire includes 38 items. Feedback of 15 participants in the standard pretest were positive in terms of intelligibility with an average time of 28 minutes. After adjustment, 27 experts validated the items in two rounds. The questionnaire achieves excellent item-CVI values between 0.91 and 1.00 and scale-CVI values of 0.97. The forward/backward translations were each carried out by two independent translators with subsequent building of a consensus through a consultant. CONCLUSION: A mulitlingual questionnaire has been developed, which measures the incidence of explicit VSED and implicit (V)SED. This questionnaire is the basis for a Swiss-wide census of all physicians and nurses of outpatient and long-term care.

The need to distinguish between different forms of oral nutrition refusal and different forms of voluntary stopping of eating and drinking.

Voluntary stopping of eating and drinking (VSED) is a well-known phenomenon among palliative care professionals. This study intent to distinguish between different forms of VSED. In a qualitative interview study 18 relatives were interviewed about their experiences of caring a person during VSED. Different forms of oral nutrition refusal and different forms of VSED were found and described. The study results help members of the multidisciplinary team to manage the situation appropriately.

An integrative review on family caregivers' involvement in care of home-dwelling elderly.

Often family members provide care-giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care-giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long-term care facilities that family members prefer to be involved in decision-making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs' involvement in home-care settings from the FCs' perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs' caring for home-dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty-six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included "relationship building with professionals," "negotiating with professional care," "being professionally supported," and "managing role expectations and knowledge sharing". The fifth theme, "working together" described the mutual care for the care recipient. Although the first four themes were consistent with a pre-existing conceptual model by Sims-Gould and Marin-Matthews (2010), the fifth required an expansion of the model with an additional contribution "collaborative practice". The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.

Voluntary Stopping of Eating and Drinking in Switzerland From Different Points of View: Protocol for a Mixed-Methods Study.

BACKGROUND: "To die with dignity" has reached the significance of a core value in democratic societies. Based on this unconditional value, people require autonomy and care. "Voluntary stopping of eating and drinking" (VSED) represents an alternative to assisted suicide because no one else is involved in the action of death fastening, even though from outside, it might be considered as an extreme form of passive euthanasia. However, there are no data available about the prevalence and frequency of either explicit VSED or the implicit reduction of food and liquid in Switzerland. The responsible and independent ethics committee of the Greater Region of Eastern Switzerland (EKOS 17/083) approved this study. OBJECTIVE: The objectives of the study were to research the prevalence and frequency of different types (implicit and explicit) of VSED in Switzerland; to explore the experiences, attitudes, handling and recommendations made by palliative care experts; to develop a practical recommendation about VSED, which will be validated by experts in Delphi rounds. METHODS: This protocol describes a convergent mixed-method design to answer the research questions. In the first step, a cross-sectional trilingual survey (in German, French, and Italian) will be carried out to obtain a comprehensive representative picture of VSED in Switzerland. In the second step, qualitative research will be carried out by focus group interviews with palliative care experts. The interviews will be recorded, transcribed, and analyzed using generic coding, and embedded in an explorative descriptive qualitative approach. Based on the results of the first two steps, a practical recommendation will be developed. Experts will validate the practical recommendation in Delphi rounds. RESULTS: The enrolment was completed in summer of 2018. Data analysis is currently underway and the first results are expected to be submitted for publication in the end of 2019. CONCLUSIONS: The results of this study will provide important information about the prevalence and frequency of VSED as well as the interpretation of palliative care experts about handling VSED in daily work. Furthermore, the practice recommendation will help professionals and institutions to improve the quality of care in patients and their relatives who made the decision to fasten death by VSED. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/10358.

Why do I have to suffer? Symptom management, views and experiences of persons with a CPTSD: a grounded theory approach.

BACKGROUND: For the 11th version of the International Classification of Diseases, a new stress related diagnosis has been proposed: complex post-traumatic stress disorder (CPTSD). It is described as a chronic condition with several severe and concurrent symptoms. In the literature, these symptoms are discussed as a common reason for seeking psychiatric treatment as they can influence and impair the quality of life not only for affected persons but also for their social and familial system. AIM: This research studies symptom management in everyday life by exploring and reconstructing the views, perceptions, experiences, facilitators and barriers of adults with CPTSD. METHODS: A theoretical sampling was used to recruit 18 to 65 years old patients diagnosed with CPTSD from an inpatient setting. The 17 semi-structured interviews were audio recorded and transcribed verbatim. The transcriptions were uploaded into MAXQDA, and a Grounded Theory method based on Corbin and Strauss was used to analyse the data. RESULTS: We provide a process model with 5 interacting phases: trauma experience, emotional ignorance, overcompensation, paroxysm, and perspectives. Each phase is specified with subcategories. CONCLUSIONS: The participants did not recognise their symptoms as such and were unaware of their diagnosis for many years. Nevertheless, they used various resources and were able to develop skills and techniques to deal with their symptoms and to function on a day-to-day basis. Overall, the process of symptom management was extremely exhausting for the participants and they felt left alone with it. The participants were eager to gain support from healthcare professionals and, when necessary, financial support from the government. Thus, these results indicate an essential need to develop support and tailored interventions for the symptom management of persons with a CPTSD. TRIAL REGISTRATION: Ethical approval was obtained from the Swiss Cantonal Ethic Commission (Nr 201,500,096). This research was also registered at the World Health Organization Clinical Trials Search Portal through the German Clinical Trial Register, Trial DRKS00012268 .

Consenting on Principles of Rehabilitation Nursing Care: A Delphi Study.

PURPOSE: Patient-centeredness, evidence-based interventions, and interdisciplinary teamwork have been described as key in neurological rehabilitation nursing. In order to develop future action plans, a group of Swiss rehabilitation nurses sought agreement on concrete principles that led the efforts to develop a common understanding of rehabilitation nursing care in Switzerland. DESIGN: A three-round Delphi study was conducted. METHODS: Literature-based statements were formulated and sent out twice to 54 rehabilitation nursing stakeholders. In the third round, the participants ranked the three most important statements out of 13. FINDINGS: Highest priority reached the statements: Rehabilitation nursing care (1) considers the uniqueness of the patients and their family, (2) offers support that promises the greatest potential for patients and their family, and (3) uses evidence-based knowledge. CONCLUSION: Statements on patient- and family-centeredness were ranked highest. Patients and families' preferences have to be considered as much as evidence-based knowledge and interventions to support patients and family. CLINICAL RELEVANCE: The study supported the discussion on action plans and enlivened new services and nursing interventions in a Swiss nursing community.

Voluntary stopping of eating and drinking (VSED) as an unknown challenge in a long-term care institution: an embedded single case study.

BACKGROUND: Chronically ill persons experience conditions of life that can become unbearable, resulting in the wish to end their life prematurely. Relatives confronted with this wish experience ambivalence between loyalty to the person's desire to die and the fear of losing this person. Caring for a person during the premature dying process can be morally challenging for nurses. One way to end one's life prematurely is Voluntary Stopping of Eating and Drinking (VSED). METHODS: This embedded single case study explored the experiences of registered nurses (embedded units of analysis: ward manager, nursing manager, nursing expert) and relatives who accompanied a 49-year-old woman suffering from multiple sclerosis during VSED in a Swiss long-term care institution (main unit of analysis). By means of a within-analysis, we performed an in-depth analysis of every embedded unit of analysis and elaborated a central phenomenon for each unit. Afterwards, we searched for common patterns in a cross-analysis of the embedded units of analysis in order to develop a central model. RESULTS: The following central concept emerged from cross-analysis of the embedded units of analysis: As a way of ending one's life prematurely, VSED represents an unfamiliar challenge to nurses and relatives in the field of tension between one's personal attitude and the agents' concerns, fears and uncertainties. Particularly significant is the personal attitude, influenced on the one hand by one's own experiences, prior knowledge, role and faith, on the other hand by the VSED-performing person's age, disease and deliberate communication of the decision. Depending on the intention of VSED as either suicide or natural dying, an accepting or dismissing attitude evolves on an institutional and personal level. CONCLUSIONS: To deal professionally with VSED in an institution, it is necessary to develop an attitude on the institutional and personal level. Educational measures and quality controls are required to ensure that VSED systematically becomes an option to hasten death. As VSED is a complex phenomenon, it is necessary to include palliative care in practice development early on and comprehensively. There is a high need of further research on this topic. Particularly, qualitative studies and hypothesis-testing approaches are required.

Transitions as experienced by persons in palliative care circumstances and their families - a qualitative meta-synthesis.

BACKGROUND: When receiving palliative care, patients and their families experience altered life situations in which they must negotiate challenges in daily life, increased care and new roles. With limited time, they also experience emotional changes that relate to their uncertain future. Transitions experienced in such situations are often studied by focusing on individual aspects, which are synthesized in the following study. The aim was to conduct a qualitative meta-synthesis to explore the experiences patients and their families gain during transitions in palliative care circumstances. METHODS: A qualitative meta-synthesis was conducted following an inductive approach as proposed by Sandelowski and Barroso. Inclusion criteria were studies with adult persons in palliative situations and articles published in English or German. Relevant articles were identified by researching the Pubmed and Cinahl databases, as well as by hand searches in journals and reference lists for the period 2000-2015. The findings of each study were analyzed using initial coding, followed by axial and selective coding in this order. Consequently, a conceptual model was derived from the categories. RESULTS: In total 2225 articles were identified in the literature search. Finally, 14 studies were included after the selection process. The central phenomenon observed among palliative care patients and their families was maintaining normality during transitions. Transitions are initially experienced unconsciously until a crisis occurs and responsive actions are necessary, which encourages patients and families to perceive the situation consciously and develop strategies for its negotiation. Patients remain caught between hopelessness and valuing their remaining time alive. As the illness progresses, informal caregivers reprioritize and balance their roles, and after death, family members inevitably find themselves in changed roles. CONCLUSIONS: In palliative care situations, transitions are experienced differently by patients and their families in a constant phenomenon that oscillates between unconscious and conscious perceptions of transitions. The derived conceptual model offers an additional perspective to existing models and helps to clarify the phenomenon in practical settings. The study promotes a differentiated conceptual view of transitions and emphasizes patients' and families' perspectives.

Symptom management in complex post-traumatic stress disorder (ICD-11), view and experience of patients and their relatives: a mixed methods approach (Research Proposal).

OBJECTIVE: Using the framework of IDC-11, complex post-traumatic stress disorder will be diagnosed using the core criteria of a post-traumatic stress disorder and the presence of at least one symptom from the following three domains: symptoms of emotional dysregulation, negative self-concept, and problems in interpersonal relationships. In the literature, these symptoms are discussed as a common reason for seeking treatment. The symptoms can influence and impair the quality of life. This article describes a mixed methods study with a sequential exploratory design. The aim is to describe specific patient characteristics, levels of symptom burden and perspectives of adult inpatients and to describe the experiences, views and needs of patients' relatives. The study will also investigate facilitators of and barriers to symptom management. The research will be conducted in four phases. The first phase will assess patients' symptom burdens. The second phase will use semi-structured interviews to explore attitudes to symptom management and perceptions of patients and their relatives. The third phase will statistically explore hypotheses generated after the qualitative interviews. The fourth phase will mix the quantitative and qualitative results and interpret critically. RESULTS: The present study will add new results to the growing literature on complex post-traumatic stress disorder. These results could serve as the basis for further research into the development of interventions to improve symptom management. Trial registration Ethical approval has been obtained from the Swiss cantonal ethic commission (Nr. 201500096). This research was also registered to the World Health Organization Clinical Trials Search Portal through the German Clinical Trial Register, Trial DRKS00012268 (21/04/2017).

Sexual Counseling in Patients With Heart Failure: A Silent Phenomenon: Results From a Convergent Parallel Mixed Method Study.

BACKGROUND: Patients with heart failure (HF) often worry about resuming sexual activity and may need information. Nurses have a role in helping patients to live with the consequences of HF and can be expected to discuss patients' sexual concerns. OBJECTIVE: The aims of this study were to identify whether nurses discuss consequences of HF on sexuality with patients and to explore their perceived role and barriers regarding this topic. METHODS: A cross-sectional research design with a convergent parallel mixed method approach was used combining qualitative and quantitative data collected with a self-reported questionnaire. RESULTS: Nurses in this study rarely addressed sexual issues with their patients. The nurses did not feel that discussing sexual concerns with their patients was their responsibility, and only 8% of the nurses expressed confidence to do so. The main phenomenon in discussing sexual concerns seems to be "one of silence": Neither patients nor nurses talk about sexual concerns. Factors influencing this include structural barriers, lack of knowledge and communication skills, as well as relevance of the topic and relationship to patients. CONCLUSION: Cardiac nurses in Germany rarely practice sexual counseling. It is a phenomenon that is silent. Education and skill-based training might hold potential to "break the silence."

Conditions, components and outcomes of Integrative Validation Therapy in a long-term care facility for people with dementia. A qualitative evaluation study.

In this study, the practical application of Integrative Validation Therapy (IVA) in a nursing home for people with dementia was investigated and evaluated from the perspectives of professionals and relatives by using Fourth Generation Evaluation. IVA, a complex intervention frequently applied in Germany's long-term care settings, is a modification of Feil's Validation Therapy and contains a specific attitude and several components of action. The findings demonstrate that professionals as well as relatives of nursing home residents gave the intervention a positive rating. From the perspective of the participating professionals, the application of IVA results in less agitated residents which also has an influence on the consumption of benzodiazepine and neuroleptics. The authors conclude that IVA is a beneficial nursing intervention helping to facilitate the illness-related transition process of people with dementia. IVA is able to support them to cope with emotional distress during transition (e.g. irritability, anxiety, depression, changes in self-esteem). Another conclusion is that IVA supports person-centred care because, with IVA, professionals react to typical needs people with dementia have: comfort, inclusion, attachment and identity (Kitwood, 2012).