The unspoken disease: symptom experience in women with vulval neoplasia and surgical treatment: a qualitative study

Women with vulval neoplasia often experience severe post-surgical complications. This study focuses on symptom experience of women during the first 6 months following surgical treatment for vulval neoplasia considering their socio-cultural context. In this qualitative study using a critical hermeneutic approach, narrative interviews were conducted. A purposeful sample of 20 patients was recruited from one Swiss and two German university hospitals. Content analysis was employed to analyse the transcribed interviews considering women's experiences and social perceptions. Narratives showed eight interrelated themes: delayed diagnosis, disclosed disease, disturbed self-image, changed vulva care, experienced wound-related symptoms, evoked emotions, affected interpersonal interactions and feared illness progression. The women experienced a general lack of information pertaining to above themes and all described strategies used to handle their situation, which affected their distress. The communication, assessment and treatment of symptoms were hampered by the society's and the health system's tendency to overlook these symptoms and leave them in the realm of the unspeakable. Health professionals need new strategies to support these women to recognise, assess and evaluate the seriousness of symptoms, and to communicate their symptom experience so that timely medical treatment is sought. This support may minimise potentially preventable complications and symptom-related distress.

A qualitative study on the role of cultural background in patients perspectives on rehabilitation

Background Low back pain (LBP) is one of the major concerns in health care. In Switzerland, musculoskeletal problems represent the third largest illness group with 9.4 million consultations per year. The return to work rate is increased by an active treatment program and saves societal costs. However, results after rehabilitation are generally poorer in patients with a Southeast European cultural background than in other patients. This qualitative research about the rehabilitation of patients with LBP and a Southeast European cultural background, therefore, explores possible barriers to successful rehabilitation. Methods We used a triangulation of methods combining three qualitative methods of data collection: 13 semi-structured in-depth interviews with patients who have a Southeast European cultural background and live in Switzerland, five semi-structured in-depth interviews and two focus groups with health professionals, and a literature review. Between June and December 2008, we recruited participants at a Rehabilitation Centre in the German-speaking part of Switzerland. Results To cope with pain, patients prefer passive strategies, which are not in line with recommended coping strategies. Moreover, the families of patients tend to support passive behaviour and reduce the autonomy of patients. Health professionals and researchers propagate active strategies including activity in the presence of pain, yet patients do not consider psychological factors contributing to LBP. The views of physicians and health professionals are in line with research evidence demonstrating the importance of psychosocial factors for LBP. Treatment goals focusing on increasing daily activities and return to work are not well understood by patients partly due to communication problems, which is something that patients and health professionals are aware of. Additional barriers to returning to work are caused by poor job satisfaction and other work-related factors. Conclusions LBP rehabilitation can be improved by addressing the following points. Early management of LBP should be activity-centred instead of pain-centred. It is mandatory to implement return to work management early, including return to adapted work, to improve rehabilitation for patients. Rehabilitation has to start when patients have been off work for three months. Using interpreters more frequently would improve communication between health professionals and patients, and reduce misunderstandings about treatment procedures. Special emphasis must be put on the process of goal-formulation by spending more time with patients in order to identify barriers to goal attainment. Information on the return to work process should also include the financial aspects of unemployment and disability.

A Qualitative Study on the Adoption of Copyright Assignment Agreements (CAA) and Copyright License Agreements (CLA) within Selected FOSS Projects

Open source software projects are multi-collaborative works incorporating the contributions of numerous developers who, in spite of publishing their code under a public license such as GPL, Apache or BSD, retain the copyright in their contributions. Having multiple copyright-owners can make the steering of a project difficult, if not impossible, as there is no ultimate authority able to take decisions relating to the maintenance and use of the project. This predicament can be remedied by centring the dispersed copyrights in a single authority via contributor agreements. Whether to introduce contributor agreements, and if so in which form, is a pressing question for many emerging, but also for established projects. The current paper provides an insight into the ethos of different projects and their reason for adopting or rejecting particular contributor agreements. It further examines the exact set-up of the contributor agreements used and concludes that smart drafting can blur the difference between CAAs and CLAs to a considerable extent, manoeuvring them into a legal grey area. To avoid costly litigation to test the legal enforceability of individual clauses, this paper proposes the establishment of an international committee comprised of developers, product managers and lawyers interested in finding a common terminology that may serve as a foundation for every contributor agreement

Skin and mucosa care in systemic sclerosis - patients' and family caregivers' experiences and expectations of a specific education programme: a qualitative study

BACKGROUND Skin and mucosal manifestations such as skin thickening, pruritus, reduced microvascular circulation, digital lesions, appearance-related changes, and dryness of the eyes and mucosa are common in systemic sclerosis (SSc). A specific skin and mucosa care education programme for patients and their family caregivers should increase their self-efficacy and improve coping strategies. AIMS The aims of this qualitative study were to explore the participants' experiences of both everyday life with skin and mucosal manifestations and the programme itself, while identifying unmet needs for programme development. METHODS Narrative interviews were conducted with eight SSc patients and two family caregivers of individuals with SSc. Using qualitative content analysis techniques, the transcribed interviews were systematically summarized and categories inductively developed. RESULTS The findings illustrated participants' experiences of skin and mucosal symptoms and revealed them to be experts in finding the right therapy mix alone (before diagnosis) and also in collaboration with health professionals (after diagnosis). Participants emphasized that the programme gave them useful education on skin and mucosa care. They described how they had to cope alone with the lack of information on pathophysiology, people's reactions, and the impact on their family and working lives. Nevertheless, participants said that they maintained a positive attitude by not dwelling on future disabilities. CONCLUSIONS Patients and family caregivers benefited from the individualized and SSc-specific education on skin and mucosa care. Future improvements to the programme should focus on imparting understandable information on SSc pathophysiology, dealing with disfigurement and seeking reliable disease information, as well as facilitating peer support.

Advancing the theory of collective empowerment: A qualitative study

In order to fully describe the construct of empowerment and to determine possible measures for this construct in racially and ethnically diverse neighborhoods, a qualitative study based on Grounded Theory was conducted at both the individual and collective levels. Participants for the study included 49 grassroots experts on community empowerment who were interviewed through semi-structured interviews and focus groups. The researcher also conducted field observations as part of the research protocol.^ The results of the study identified benchmarks of individual and collective empowerment and hundreds of possible markers of collective empowerment applicable in diverse communities. Results also indicated that community involvement is essential in the selection and implementation of proper measures. Additional findings were that the construct of empowerment involves specific principles of empowering relationships and particular motivational factors. All of these findings lead to a two dimensional model of empowerment based on the concepts of relationships among members of a collective body and the collective body's desire for socio-political change.^ These results suggest that the design, implementation, and evaluation of programs that foster empowerment must be based on collaborative ventures between the population being served and program staff because of the interactive, synergistic nature of the construct. In addition, empowering programs should embrace specific principles and processes of individual and collective empowerment in order to maximize their effectiveness and efficiency. And finally, the results suggest that collaboratively choosing markers to measure the processes and outcomes of empowerment in the main systems and populations living in today's multifaceted communities is a useful mechanism to determine change. ^

'Saying it without words': a qualitative study of oncology staff's experiences with speaking up about safety concerns.

OBJECTIVES To explore the experiences of oncology staff with communicating safety concerns and to examine situational factors and motivations surrounding the decision whether and how to speak up using semistructured interviews. SETTING 7 oncology departments of six hospitals in Switzerland. PARTICIPANTS Diverse sample of 32 experienced oncology healthcare professionals. RESULTS Nurses and doctors commonly experience situations which raise their concerns and require questioning, clarifying and correcting. Participants often used non-verbal communication to signal safety concerns. Speaking-up behaviour was strongly related to a clinical safety issue. Most episodes of 'silence' were connected to hygiene, isolation and invasive procedures. In contrast, there seemed to exist a strong culture to communicate questions, doubts and concerns relating to medication. Nearly all interviewees were concerned with 'how' to say it and in particular those of lower hierarchical status reflected on deliberate 'voicing tactics'. CONCLUSIONS Our results indicate a widely accepted culture to discuss any concerns relating to medication safety while other issues are more difficult to voice. Clinicians devote considerable efforts to evaluate the situation and sensitively decide whether and how to speak up. Our results can serve as a starting point to develop a shared understanding of risks and appropriate communication of safety concerns among staff in oncology.

Awareness of headache and of National Headache Society activities among primary care physicians - a qualitative study

BACKGROUND Headache is one of the most common symptoms in primary care. To improve the quality of headache diagnosis and management with the largest possible benefit for the general population, headache and pain societies around the world have recently been devoting more attention to headache in primary care.The aim of the study was to investigate the potential contribution that national societies can make toward raising the awareness of primary headaches in general practice. FINDINGS In a qualitative telephone survey, targeting primary care practices (PCP), we asked about the frequency of headache patients in their practices and inquired about their treatment and referral strategies.A total of 1000 telephone interviews with PCP have been conducted. Three-hundred and fifty physicians have been directly interviewed, 95% of them see headache patients every week, 23% daily. Direct MRI referral is done by 84%. Sixty-two per cent of the physicians knew the Swiss headache society, 73% were interested in further education about headaches. CONCLUSION The survey yielded information about the physicians' awareness of the Swiss Headache Society and its activities, and about their desire for continuing education in the area of headache. National headache societies should work to improve the cooperation between headache specialists and PCP, aiming for a better care for our patients with headache.

What women want: a qualitative study about postnatal midwifery care at home

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.

Early detection of psychosis: helpful or stigmatizing experience? A qualitative study

AIM Despite the large scientific debate concerning potential stigmatizing effects of identifying an individual as being in an at-risk mental state (ARMS) for psychosis, studies investigating this topic from the subjective perspective of patients are rare. This study assesses whether ARMS individuals experience stigmatization and to what extent being informed about the ARMS is experienced as helpful or harmful. METHODS Eleven ARMS individuals, currently participating in the follow-up assessments of the prospective Basel Früherkennung von Psychosen (FePsy; English: Early Detection of Psychosis) study, were interviewed in detail using a semistructured qualitative interview developed for this purpose. Data were analysed using Interpretative Phenomenological Analysis. RESULTS Most individuals experiencing first symptoms reported sensing that there was 'something wrong with them' and felt in need of help. They were relieved that a specific term was assigned to their symptoms. The support received from the early detection centre was generally experienced as helpful. Many patients reported stigmatization and discrimination that appeared to be the result of altered behaviour and social withdrawal due to the prepsychotic symptoms they experienced prior to contact with the early detection clinic. CONCLUSIONS The results suggest that early detection services help individuals cope with symptoms and potential stigmatization rather than enhancing or causing the latter. More emphasis should be put on the subjective experiences of those concerned when debating the advantages and disadvantages of early detection with regard to stigma. There was no evidence for increased perceived stigma and discrimination as a result of receiving information about the ARMS.

High-Dose Benzodiazepine Dependence: A Qualitative Study of Patients' Perceptions on Initiation, Reasons for Use, and Obtainment

BACKGROUND High-dose benzodiazepine (BZD) dependence is associated with a wide variety of negative health consequences. Affected individuals are reported to suffer from severe mental disorders and are often unable to achieve long-term abstinence via recommended discontinuation strategies. Although it is increasingly understood that treatment interventions should take subjective experiences and beliefs into account, the perceptions of this group of individuals remain under-investigated. METHODS We conducted an exploratory qualitative study with 41 adult subjects meeting criteria for (high-dose) BZD-dependence, as defined by ICD-10. One-on-one in-depth interviews allowed for an exploration of this group's views on the reasons behind their initial and then continued use of BZDs, as well as their procurement strategies. Mayring's qualitative content analysis was used to evaluate our data. RESULTS In this sample, all participants had developed explanatory models for why they began using BZDs. We identified a multitude of reasons that we grouped into four broad categories, as explaining continued BZD use: (1) to cope with symptoms of psychological distress or mental disorder other than substance use, (2) to manage symptoms of physical or psychological discomfort associated with somatic disorder, (3) to alleviate symptoms of substance-related disorders, and (4) for recreational purposes, that is, sensation-seeking and other social reasons. Subjects often considered BZDs less dangerous than other substances and associated their use more often with harm reduction than as recreational. Specific obtainment strategies varied widely: the majority of participants oscillated between legal and illegal methods, often relying on the black market when faced with treatment termination. CONCLUSIONS Irrespective of comorbidity, participants expressed a clear preference for medically related explanatory models for their BZD use. We therefore suggest that clinicians consider patients' motives for long-term, high-dose BZD use when formulating treatment plans for this patient group, especially since it is known that individuals are more compliant with approaches they perceive to be manageable, tolerable, and effective.