Irena Anna Frei

Quality and efficacy of educational materials on cancer-related fatigue: views of patients from two European countries

Cancer-related fatigue is a symptom with great implications for the quality of life of those that experience it. It is regarded as one of the most distressing symptoms that people with cancer develop. Its aetiology is complex, and although the mechanisms underlying fatigue have not been fully clarified it is evident that it is exacerbated by treatments intended to cure or palliate the disease. Patients at risk of cancer-related fatigue need access to information that will enable them to manage it effectively. There are a growing number of materials available to patients in different European countries on this topic, but it is unclear how useful patients find these. This study was undertaken to explore this through conducting focus groups with patients in the United Kingdom and Switzerland. One focus group was conducted in each country. Findings from these determined that individuals voiced common concerns: fatigue had not been addressed in the clinical setting - individuals surmised why this occurred; participants had not accessed materials on cancer-related fatigue previously; they made recommendations for future resources for patients. However, what was evident was that unless patients can access materials on this topic, their quality becomes purely an academic issue.

Moral distress in nurses at an acute care hospital in Switzerland: Results of a pilot study

Background: In the context of new reimbursement systems like diagnosis-related groups, moral distress is becoming a growing problem for healthcare providers. Moral distress can trigger emotional and physical reactions in nurses and can cause them to withdraw emotionally from patients or can cause them to change their work place. Objective: The aim of this pilot study was to develop an instrument to measure moral distress among acute care nurses in the German-speaking context, to test its applicability, and to obtain initial indications of the instrument’s validity. Method: The study was designed in 2011 as a cross-sectional pilot survey. Conducted on eight units of one university hospital in German-speaking Switzerland, 294 registered nurses were asked to fill out a web-based questionnaire on moral distress. Ethical considerations: The study proposal was approved by the cantonal ethics committee. All participating nurses provided informed consent and were assured of data confidentiality. Results: The survey had a response rate of 55%. The results show the prevalence of statements on the questionnaire indicating situations with the potential to trigger moral distress. The entire range of answers was used in the responses. Most participants found the questionnaire comprehensible, while some criticized the phraseology of certain statements. Many more found the registration process prior to online access to be too time consuming. Nurses confirmed that the results reflect their subjective assessment of their situation and their experience of moral distress. Conclusion: The newly developed moral distress questionnaire appears to produce face validity and is sufficiently applicable for use in our study. The results indicate that moral distress appears to be a relevant phenomenon also in Swiss hospitals and that nurses were experiencing it prior to the introduction of Swiss diagnosis-related groups.

Monitoring the impact of the DRG payment system on nursing service context factors in Swiss acute care hospitals: Study protocol.

Aims: With this study protocol, a research program is introduced. Its overall aim is to prepare the instruments and to conduct the first monitoring of nursing service context factors at three university and two cantonal hospitals in Switzerland prior to the introduction of the reimbursement system based on Diagnosis Related Groups (DRG) and to further develop a theoretical model as well as a methodology for future monitoring following the introduction of DRGs. Background: DRG was introduced to all acute care hospitals in Switzerland in 2012. In other countries, DRG introduction led to rationing and subsequently to a reduction in nursing care. As result, nursing-sensitive patient outcomes were seriously jeopardised. Switzerland has the opportunity to learn from the consequences experienced by other countries when they introduced DRGs. Their experiences highlight that DRGs influence nursing service context factors such as complexity of nursing care or leadership, which in turn influence nursing-sensitive patient outcomes. For this reason, the monitoring of nursing service context factors needs to be an integral part of the introduction of DRGs. However, most acute care hospitals in Switzerland do not monitor nursing service context data. Nursing managers and hospital executive boards will be in need of this data in the future, in order to distribute resources effectively. Methods/Design: A mixed methods design in the form of a sequential explanatory strategy was chosen. During the preparation phase, starting in spring 2011, instruments were selected and prepared, and the access to patient and nursing data in the hospitals was organized. Following this, online collection of quantitative data was conducted in fall 2011. In summer 2012, qualitative data was gathered using focus group interviews, which helped to describe the processes in more detail. During 2013 and 2014, an integration process is being conducted involving complementing, comparing and contrasting quantitative and qualitative findings. Conclusion: The research program will produce baseline data on nursing service context factors in Swiss acute care hospitals prior to DRG introduction as well as a theoretical model and a methodology to support nursing managers and hospital executive boards in distributing resources effectively. The study was approved by the ethics committees of Basel, Bern, Solothurn and Zürich.

[Attitude of cancer patients to fatigue: patient attitude in Switzerland and England].

Im Verlauf einer Krebserkrankung leiden viele Menschen unter unublicher, belastender Mudigkeit. Forschungsuntersuchungen der letzten Jahre haben Pflegenden, Medizinern und Psychologen gezeigt, dass...In the course of a cancer trajectory, many patients suffer from distressing fatigue. In past years, research has shown that care givers tend to underestimate or even to ignore this frequent phenomenon. Despite increasing knowledge, fatigue seems to remain an orphan topic in symptom management. Aim: A qualitative research strategy was used to explore the perception of cancer patients regarding the awareness of fatigue in professionals and the way they deal with it. Patients also evaluated the usefulness of some currently available information material about fatigue. Methods: The expert-opinion of cancer patients in Switzerland and England was analysed. Convenient sampling guided the selection process of seven patients in each country. A tape-recorded focus-group interview served as method to collect and transcribe data. Data were analysed according to the framework analyses by Richie & Spencer. Results: Results were very similar in both countries. Patients stated a great need for more information regarding fatigue. They feel that care givers are not sufficiently aware of it and that a specific support is not part of current standard practice. The information material was well received and generally judged as very good and helpful. Conclusions: Communication barriers in professionals as well as in patients continue to exist. Patients wish to be better informed by care givers. The available information material serves well to support this information as they provide words for the unmentioned phenomenon. Far more professional fatigue education is needed to raise care givers’ awareness

Was Wöchnerinnen wünschen: Eine qualitative Studie zur häuslichen Wochenbettbetreuung nach der Spitalentlassung durch frei praktizierende Hebammen

In Switzerland, decreases in regular hospital treatment after birth are leading increasingly to mother and child being cared for at home by independent midwives. The research herein was carried out in order to understand the needs of mothers in their home once they leave the hospital and what this midwife provided care consists of. In 2008, eight women from central Switzerland were interviewed on two separate occasions after the birth of their child, and the interviews were analysed using content analysing techniques. Mothers explained that they wanted their baby and themselves to be well cared for. They needed rest and support for recuperation and wished to spend quality time with their new family. The midwifes assisted the mothers to fulfil their needs by counselling, by instructing and by giving information, but they rarely encouraged them to be together as a family. The relationship between midwife and mother turned out to be an important support. Mothers were satisfied if mutual trust was built and if the midwife perceived their needs, respected their autonomy and took the time to be with them. Midwives contribute to the basic well-being of families and support women with medical expertise and ongoing care. Furthermore families need support in general household issues so that new mothers can recover sufficiently.

Women's experiences of nurse case management on a gynaecological oncology unit in a Swiss tertiary hospital. A thematic analysis

RATIONALE Women with gynaecological cancer face various physical, social and emotional challenges concerning their health. Existing research shows that case management can improve patient satisfaction and reduce readmission rates. Although nurse case management was introduced on a gynaecological oncology unit in a Swiss university hospital in 2013, little is known about the experiences of female patients on a unit that uses this model of care. AIMS The aims were to explore womens experiences and to gain deeper understanding about hospital-based nurse case management on a gynaecological oncology unit and to qualitatively evaluate the concept of nurse case management. METHODS Sound research knowledge suggests that experiences are best explored with a qualitative research design. Ten participant interviews were conducted and inductively analysed between September 2014 and May 2015 as described by the thematic analysis method. Ethical approval was obtained, and the women signed a consent form. RESULTS The first theme was named continuous relationship, with the nurse case manager as contact person and trusted partner. Study participants explained that friendliness and being present were essential qualities of nurse case management. Secondly, an essential support for women dealing with the situation of gynaecological cancer was described in the theme sharing information. The organisation of rehabilitation and other services by the nurse case management defined the third theme coordinating care. CONCLUSIONS AND LIMITATIONS Trust was seen as the basis of the continuous relationship, marked by friendliness and presence of the nurse case manager. The helpful approach of persons practicing nurse case management made dealing with the situation of illness easier for women with gynaecological cancer. Coordination of information between the nurse case management and other healthcare services could be improved. Further evaluation is suggested to explore effects of the concept on family members.

Erfahrungen Angehöriger mit der Betreuung von Menschen mit Demenz und zugehender Beratung Eine interpretierende phänomenologische Studie

BACKGROUND Almost two-thirds of the 110,000 people living with dementia in Switzerland receive home care from family members. Outreach counselling can reduce the burden for family caregivers and delay nursing home placement. However, little is known of how this works and how caregivers experience the counselling. The Canton of Aargau Alzheimers Association has been conducting a pilot project to demonstrate the necessity, effectiveness and practicability of outreach counselling in (their canton). AIM As a part of the evaluation of the project this study explored how family members experience the process of caring for a relative with dementia and outreach counselling. METHOD Interpretive phenomenology–a qualitative approach–was used to analyse data from interviews with twelve family caregivers. RESULTS Most family members felt supported in caregiving by outreach counselling. Three aspects of the counselling were especially important to the participants: being understood and taken seriously by the counsellor; receiving answers to their most pressing questions concerning the illness and being supported when difficult decision had to be taken; regaining personal time and learning how to better interact with the person with dementia. Two participants would have wished for more help by the counsellor. CONCLUSIONS To meet the needs of the family members, consultants should have sufficient experience in dementia patient care and should be strongly networked across the local health and welfare system. This study shows that family members can experience outreach counselling as a great support in their caregiving roles.

Erfahrungen Angehöriger mit der Betreuung von Menschen mit Demenz und zugehender Beratung

BACKGROUND Almost two-thirds of the 110,000 people living with dementia in Switzerland receive home care from family members. Outreach counselling can reduce the burden for family caregivers and delay nursing home placement. However, little is known of how this works and how caregivers experience the counselling. The Canton of Aargau Alzheimers Association has been conducting a pilot project to demonstrate the necessity, effectiveness and practicability of outreach counselling in (their canton). AIM As a part of the evaluation of the project this study explored how family members experience the process of caring for a relative with dementia and outreach counselling. METHOD Interpretive phenomenology–a qualitative approach–was used to analyse data from interviews with twelve family caregivers. RESULTS Most family members felt supported in caregiving by outreach counselling. Three aspects of the counselling were especially important to the participants: being understood and taken seriously by the counsellor; receiving answers to their most pressing questions concerning the illness and being supported when difficult decision had to be taken; regaining personal time and learning how to better interact with the person with dementia. Two participants would have wished for more help by the counsellor. CONCLUSIONS To meet the needs of the family members, consultants should have sufficient experience in dementia patient care and should be strongly networked across the local health and welfare system. This study shows that family members can experience outreach counselling as a great support in their caregiving roles.

Ethische Reflexion von Pflegenden im Akutbereich – eine Thematische Analyse

BACKGROUND In the day-to-day course of nursing, ethical issues are being openly articulated to a growing extent. However, nurses only rarely systematically address these issues. This subject was explored in interviews with professionals who have a particular focus on ethics. OBJECTIVE Gain input for further developing the skills of nursing staff in ethical reasoning. METHOD In two focus groups and four individual interviews, we questioned 14 professionals, including nine nurses, who have a special interest in ethics. RESULTS Nurses find it ethically problematic when the wishes of patients are not respected or something is forced on them, creating the impression that the care being given is exacerbating rather than alleviating the patient’s suffering. These problematic aspects are often overlooked because the consequences of the action in question are not immediately apparent. Ethical issues in nursing are often addressed in informal, non-systematic discussions among nursing staff. Nurses actively and confidently engage in discussions on treatment goals, and the teamwork with doctors is usually experienced as being based on mutual respect and partnership. The inherent hierarchical role differences between nursing and medical staff nevertheless manifest in ethical issues. CONCLUSION Through the practical application of ethical reasoning in day-to-day nursing, structured discussions of the ethical aspects of cases and dedicated further education, nurses should learn to better recognise ethical issues in nursing and effectively analyse them and find solutions.

Schade, dass ich dies nicht vorher gewusst habe! Was krebskranke von den Informationen uber fatigue halten: eine Beurteilung durch patienten in der Schweiz und in England

Im Verlauf einer Krebserkrankung leiden viele Menschen unter unublicher, belastender Mudigkeit. Forschungsuntersuchungen der letzten Jahre haben Pflegenden, Medizinern und Psychologen gezeigt, dass...In the course of a cancer trajectory, many patients suffer from distressing fatigue. In past years, research has shown that care givers tend to underestimate or even to ignore this frequent phenomenon. Despite increasing knowledge, fatigue seems to remain an orphan topic in symptom management. Aim: A qualitative research strategy was used to explore the perception of cancer patients regarding the awareness of fatigue in professionals and the way they deal with it. Patients also evaluated the usefulness of some currently available information material about fatigue. Methods: The expert-opinion of cancer patients in Switzerland and England was analysed. Convenient sampling guided the selection process of seven patients in each country. A tape-recorded focus-group interview served as method to collect and transcribe data. Data were analysed according to the framework analyses by Richie & Spencer. Results: Results were very similar in both countries. Patients stated a great need for more information regarding fatigue. They feel that care givers are not sufficiently aware of it and that a specific support is not part of current standard practice. The information material was well received and generally judged as very good and helpful. Conclusions: Communication barriers in professionals as well as in patients continue to exist. Patients wish to be better informed by care givers. The available information material serves well to support this information as they provide words for the unmentioned phenomenon. Far more professional fatigue education is needed to raise care givers’ awareness