Communication About Chronic Pain in Older Persons' Social Networks: Study Protocol of a Qualitative Approach.

A lack of social relations appears to impact on health and life expectancy among the older persons. The quality and diversity of social relations are correlated with good health and well-being in later life. Chronic pain is a crucial issue in aging population. Effective communication between the older persons with chronic pain, their relatives and the actors of the healthcare system facilitates the management of this condition. Studies on communication in later life generally do not consider the older persons' social network as a whole, focusing only a specific segment (e.g., family or medical staff). This lack of scientific data prevents the actors of the healthcare system from offering solutions to bridge clinically relevant communication gaps. As a consequence, our study has three objectives: (1) to identify how the older persons perceive communication about chronic pain with their social network; (2) to identify their unmet communication needs; (3) to develop recommendations that improve communication about chronic pain in later life. The study will be divided into two phases. The first phase will meet objectives 1 and 2. It will involve individual interviews with about 50 people over 75 years old suffering from chronic pain and without major cognitive or auditory troubles. In this phase, we will apply a multi-layered analysis. We will map the older persons' personal network and identify their communication practices and needs, by combining content and discourse analysis with social network theories. The second phase of the study will aim at recommendations based on the results of the first phase (objective 3). It will require focus groups with different sets of stakeholders (older persons, relative caregivers, health professionals, decision-makers). In the second phase, we will use content analysis to pinpoint the concerns and suggestions for action. The results will be disseminated on three levels: (1) to the scientific world (specialists in the field of health and aging and health communication); (2) to health practitioners working with older persons; (3) to society at large, with a focus on institutions and groups directly concerned by the issue.

Partnership with social care professionals as a context for promoting self-determination among people with intellectual disabilities.

BACKGROUND: People with intellectual disabilities who live in residential facilities may need social support to express self determination. Relationships with social care professionals provide an important context for promoting self-determination. Adopting a socioecological perspective, our study aimed to better understand the nature of these relationships. METHOD: Over a period of ten months, we held 13 focus group discussions with a total of 20 participants, including both residents and staff at facilities for people with intellectual disabilities. Using transcripts of these discussions, we analysed expressions of self-determination among people with intellectual disabilities and the responses of social care professionals. RESULTS: Our results highlight the importance of relational adjustment in fostering self-determination among people with intellectual disabilities and underline the importance of respective roles within relationships between people with intellectual disabilities and social care professionals. CONCLUSION: The partnership between people with intellectual disabilities and professionals seems to be the most effective type of relationship in order to support the self-determination of people with intellectual disabilities. This paper provides a fresh perspective on the role played by people with intellectual disabilities in their relationships with social care professionals. By engaging people with intellectual disabilities as partners in fostering self-determination, social care professionals can encourage social participation and feelings of empowerment. Relationships based on partnership offer people with intellectual disabilities a form of hetero-regulation that can help them overcome challenges to behaving in a fully self-determined way. However, partnership also requires changes in professional practices and attitudes.

Thinking rural health in Santal community in West Bengal: An interprofessional bottom-up approach to rural health.

BACKGROUND: An interprofessional and cross-cultural pedagogical project in community health for students in nursing, social work, anthropology and medicine at the end of the bachelor's degree begun in 2014. After a rural context fieldwork in several Santal villages of West Bengal (India), students had to conduct a research project, based on a community-health topic. AIMS: This paper describes how such a pedagogical project, introducing students to ethnographic research, can initiate new ways of thinking for possible future health interventions in rural communities. METHODS: An inductive approach based on ethnography was used during the fieldwork, including observations, interviews, focus groups and local documentation. RESULTS: Our observations led to the finding that actions in rural health cannot be initiated without: promoting an interprofessional/interdisciplinary perspective and a culture of complexity and reflectivity; considering local populations in transition and not in a fixed homogenous situation; understanding more than imposing; taking into account local disease classification and local pragmatic solutions; considering the dialogue between bio-medicine and therapeutic pluralism; considering local perceptions and practices; considering care itineraries/pathways; and finally being conscious of our apostolic function. CONCLUSION: Our interprofessional pedagogical project promotes a bottom-up approach in dialogue with a global health vision.

Knowledge Translation and Evidence-Based Practice: A Qualitative Study on Clinical Dietitians' Perceptions and Practices in Switzerland.

BACKGROUND: Knowledge translation (KT) in health care is essential to promote quality of care and reduce the knowledge-to-practice gap. Little is known about KT among dietitians, and a better understanding of how this process pans out is fundamental to support their clinical practice. OBJECTIVE: To explore clinical dietitians' perceptions and practices concerning preferences and access to information sources in clinical practice, KT activities, research in nutrition and dietetics, and evidence-based practice (EBP). DESIGN, PARTICIPANTS, AND SETTING: Eight interviews and two focus groups involving a total of 15 participants were conducted in 2013 among members of the Swiss Association for Registered Dietitians in the French- and German-speaking regions of Switzerland. ANALYSIS PERFORMED: Thematic analysis drawn from a constructivist grounded theory approach. RESULTS: Information from colleagues and experts of the field were favored when facing unfamiliar situations in clinical practice. Critically selecting evidence-based information was considered challenging, but dietitians declared they were at ease to integrate patients' preferences and values, and their clinical expertise and judgment, in decision making, which are fundamental elements of EBP. A major reported barrier to KT was the perception that time to identify and read scientific literature was not expected during working hours and that instead, this time should be spent in clinical activities with patients. On the other hand, dietitians identified that their frequent involvement in educational activities such as knowledge dissemination or tailoring favored the integration of evidence into practice. Finally, dietitians struggled more to identify evidence-based information about counseling and communication than about biomedical knowledge. CONCLUSIONS: Dietitians mentioned being involved in each step of the KT process (ie, synthesis, dissemination, exchange, and ethically sound application of knowledge). Barriers and facilitators identified in this study need to be explored in a larger population to develop strategies to facilitate KT and EBP in dietetics practice.

Perceptions and understandings of self-determination in the context of relationships between people with intellectual disabilities and social care professionals.

This study examines perceptions and understandings of self-determination in the context of relationships between people with intellectual disabilities and social care professionals. We held focus group discussions to explore the views and experiences of 10 residents and 10 professionals at three facilities for people with intellectual disabilities located in Western Switzerland. Participants perceived and understood self-determination in terms of decision-making, social skills, procedures, identity, self-consciousness, autonomy, freedom, barriers, and facilitators. The research process highlighted the shifting and situational nature of the concept, as well as the importance of self-determination for people with intellectual disabilities. The findings also highlight the importance of discussion and reflection on the concept of self-determination and its benefits for people with intellectual disabilities.

Patient-reported healthcare expectations in inflammatory bowel diseases.

BACKGROUND: Patient-reported experience is an important component of a holistic approach to quality of care. Patients' expectations of treatments and global disease management may indicate their illness representations and their satisfaction and hopes regarding quality of care. OBJECTIVE: To study expectations of patients with inflammatory bowel disease. METHODS: Two focus groups were conducted with 14 patients to explore their expectations about treatments and disease management. From qualitative content analyses of focus group discussions, we built a 22-item expectations questionnaire that was sent to 1756 patients of the Swiss IBD cohort. Answers were collected on a visual analog scale from 0 to 100, and medians (interquartile range [IQR]) calculated. Factor analysis identified main expectation dimensions, and multivariate analyses were performed to describe associations with patient characteristics. RESULTS: Of 1094 patients (62%) included in the study, 54% were female, 54% had Crohn's disease, 35% had tertiary education, and 72% were employed. Expectation dimensions comprised realistic, predictive, and ideal expectations and were linked to information, communication, daily care, and disease recognition. Half (11 of 22) of the expectations were ranked as very high (median score > 70), the 2 most important being good coordination between general practitioners and specialists (median score: 89, IQR: 71-96) and information on treatment adverse events (89, IQR: 71-96). Women had overall higher levels of expectations than did men. Expectations were not associated with psychosocial measures, except those related to disease recognition, and most of them were highly associated with increased concerns on disease constraints and uncertainty. CONCLUSIONS: Patients have high expectations for information and communication among caregivers, the levels varying by gender and region. Patients also appear to request more active participation in their disease management.

Surgery nurses' telephone communication: a mixed methods study with a special focus on newcomers' calls.

Aims: The aim of this study was (i) to document the main features of surgery nurses' telephone calls, with a special focus on newcomers' calls; and (ii) to identify the main activities accomplished during the newcomers' calls. Design: Mixed methods study. Methods: We audio recorded telephone calls internal to the hospital in two surgery nursing stations. We performed statistical descriptive analysis of the total collection of calls and of those specifically involving the newcomers and compared both sets. We also performed conversation analysis-based coding of the main activities accomplished during newcomers' calls. Results: Surgery nurses' telephone calls are extremely brief, predominantly nurse initiated and take place with a wide range of interlocutors who, for the most part, use mobile phones. The newcomers' calls are only slightly longer, take place with a more limited, but still wide, range of interlocutors and are even more often nurse initiated. The main activities of newcomers' calls are requests and activities related to connecting relevant interlocutors.

Patient self-reported concerns in inflammatory bowel diseases: A gender-specific subjective quality-of-life indicator.

BACKGROUND: Patient-reported disease perceptions are important components to be considered within a holistic model of quality of care. Gender may have an influence on these perceptions. We aimed to explore gender-specific concerns of patients included in a national bilingual inflammatory bowel disease cohort. METHODS: Following a qualitative study, we built a questionnaire comprising 37 items of concern. Answers were collected on a visual analog scale ranging from 0 to 100. Principal axis factor analysis was used to explore concern domains. Linear multiple regressions were conducted to assess associations with patient characteristics. RESULTS: Of 1102 patients who replied to the survey, 54% were female and 54% had Crohn's disease. We identified six domains of concern: socialization and stigmatization, disease-related constraints and uncertainty, symptoms and their impact on body and mind, loss of body control (including sexuality), disease transmission, and long-term impact of the disease. Cancer concerns were among the highest scored by all patients (median 61.8). Severity of symptoms was the only factor associated with concerns, unrelated to dimension and gender (p<0.015). In women, being >40 years decreased disease-related constraints and uncertainty concerns, and being at home or unemployed increased them. Treatments were associated with increased socialization and stigmatization and with increased disease-related constraints and uncertainty concerns in men. Overall, psychosomatic characteristics were highly associated with concerns for both men and women. Depending on the concern dimensions, increased levels of concern were associated with the highest signs of anxiety in women or depression in men, as well as lower health-related quality of life in men. CONCLUSIONS: Patients have numerous concerns related to their illness that need to be reassessed regularly. Concerns differ between men and women, suggesting that information and communication about the disease should take gender differences and subjective perceptions of quality of life into consideration.

Meeting physicians' needs: a bottom-up approach for improving the implementation of medical knowledge into practice.

BACKGROUND: Multiple barriers to knowledge translation in medicine have been identified (ranging from information overload to abstraction of models), leading to important implementation gaps. This study aimed at assessing the suggestions of practicing physicians for possible improvements of knowledge translation (KT) effectiveness into clinical practice. METHODS: We used a mixed methods design. French- German- and Italian-speaking general practitioners, psychiatrists, orthopaedic surgeons, cardiologists, and diabetologists practicing in Switzerland were interrogated through semi-structured interviews, focus group discussions, and an online survey. RESULTS: A total of 985 physicians from three regions of Switzerland participated in the online survey, whereas 39 participated in focus group discussions and 14 in face-to-face interviews. Physicians expressed limitations and difficulties related to KT into their daily practice. Several barriers were identified, including influence and pressure of pharmaceutical companies, non-publication of negative results, mismatch between guidelines and practice, education gaps, and insufficient collaboration between research and practice. Suggestions to overcome barriers were improving education concerning the evaluation of scientific publications, expanding applicability of guidelines, having free and easy access to independent journals, developing collaborations between research and practice, and creating tools to facilitate access to medical information. CONCLUSIONS: Our study provides suggestions for improving KT into daily medical practice, matching the views, needs and preferences of practicing physicians. Responding to suggestions for improvements brought up by physicians may lead to better knowledge translation, higher professional satisfaction, and better healthcare outcomes.

Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort?

BACKGROUND: Inflammatory Bowel Disease (IBD) patients are confronted with needs and concerns related to their disease. AIM: To explore information expectations of patients included in a national bilingual IBD cohort in Switzerland (SIBDC). METHODS: This is a mixed-methods study, comprising 1) a semi-narrative survey sent to 1506 patients from the SIBDC and 2) two focus groups conducted with 14 patients to explore and assess the relevance of the survey's findings. Data collected within the framework of the SIBDC was used to characterize survey's responders. RESULTS: 728 patients (48%) replied to the survey: 52.5% females, 56% Crohn's disease (CD), 87% secondary/tertiary level educated, 70% full/part-time employed. On average, 47% of patients sought for information, regardless of the disease stage; 27% of them were dissatisfied with information received at the time of first symptoms. During flares, 43% were concerned about drugs and therapies; in remission, 57% had concerns on research and developments; 27% searched for information linked to daily disease management. Information-seeking increased when active disease, for CD with high levels of perceived stress (OR = 2.47; p = 0.003), and for all with higher posttraumatic stress symptoms. The focus groups confirmed a perceived lack of information about general functioning, disease course, treatments and their risks, extra-intestinal symptoms and manifestations. CONCLUSIONS: Information remains insufficient for IBD patients. Lack of information in specific domains can potentially cause stress and hinder detection of symptoms. Better information should be considered as a potentially important component in improving patients' outcomes in IBD.

Patients and gastroenterologists' perceptions of treatments for inflammatory bowel diseases: do their perspectives match?

BACKGROUND: Perceptions of appropriateness of treatments may differ between gastroenterologists (GIs) and inflammatory bowel disease (IBD) patients. The aim of this study was to explore and compare GIs' and patients' perceptions of risks and benefits of treatments and prioritization of expected outcomes. METHODS: Four vignette cases were drawn from clinical situations and used in three independent focus groups with GIs (n = 7), ulcerative colitis (UC-p, n = 8) and Crohn's disease patients (CD-p, n = 6). Content analysis was performed based on the conversation transcripts. RESULTS: UC-p agreed more often with GIs' treatment choices than CD-p. CD-p often considered 5-ASA as a placebo. UC-p saw topical 5-ASA as a temporary solution, neither comfortable nor practical when professionally active. Azathioprine was considered as the treatment for which the risks versus benefits were perceived as the highest. The main risk perceived by patients on anti-TNFs was a potential loss of response. Divergences were observed on 1) stop of treatment: UC-p did not easily concur with stopping a treatment, which differed from GIs' expectation of patients' perceptions; CD-p were more prone to consider stopping treatment than GIs, 2) perception of outcomes: physicians had a focus on long-term objective goals. Patients' expectations were of shorter term and mainly concerned stress management, nutritional advice, and information on the treatments effects. CONCLUSIONS: Overall, patients and GIs agreed on perceptions of IBD treatments. GIs seemed more concerned about objective and scientific measures of remission whereas patients focused on quality of life and social outcomes when it came to evaluating a therapy.

[Telephone and coordination of intensive care in hospital]. / Téléphone et coordination des soins intensifs à l'hôpital.

The telephone is a central tool for the coordination of care in hospitals between the general wards and intensive care. Calls are short and frequent. They concern a wide variety of issues handled in parallel with other activities. This research, carried out by a Swiss team, examines the practices of telephone communication in hospitals.