Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?

<p>Abstract</p> <p>Background</p> <p>Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.</p> <p>Methods</p> <p>A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.</p> <p>Results</p> <p>The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.</p> <p>Conclusion</p> <p>The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.</p

Information transfer: what do decision makers want and need from researchers?

<p>Abstract</p> <p>Purpose</p> <p>The purpose of this study was to undertake a systematic assessment of the need for research-based information by decision-makers working in community-based organizations. It is part of a more comprehensive knowledge transfer and exchange strategy that seeks to understand both the content required and the format/methods by which such information should be presented.</p> <p>Methods</p> <p>This was a cross-sectional telephone survey. Questions covered current practices, research use, and demographic information, as well as preferences for receiving research information. Three types of organizations participated: Children's Treatment Centres of Ontario (CTCs); Ontario Community Care Access Centres (CCACs); and District Health Councils (DHCs). The analysis used descriptive statistics and analyses of variance (ANOVA) to describe and explore variations across organizations.</p> <p>Results</p> <p>The participation rate was 70%. The highest perception of barriers to the use of research information was reported by the CCAC respondents, followed by CTCs and DHCs. The CTCs and DHCs reported greater use of research evidence in planning decisions as compared to the CCACs. Four sources of information transfer were consistently identified. These were websites, health-related research journals, electronic mail, and conferences and workshops. Preferred formats for receiving information were executive summaries, abstracts, and original articles.</p> <p>Conclusion</p> <p>There were a number of similarities across organization type with respect to perceived barriers to research transfer, as well as the types of activities the organizations engaged in to promote research use in decision-making. These findings support the importance of developing interactive, collaborative knowledge transfer strategies, as well as the need to foster relationships with health care decision-makers, practitioners and policymakers.</p

Increased integrated testing for HIV, hepatitis C and sexually transmitted infections in health care facilities: results from the INTEGRATE Joint Action pilots in Lithuania, Romania and Spain

BACKGROUND: Indicator condition guided HIV testing is a proven effective strategy for increasing HIV diagnosis in health care facilities. As part of the INTEGRATE Joint Action, we conducted four pilot studies, aiming to increase integrated testing for HIV/HCV/HBV and sexually transmitted infections, by introducing and expanding existing indicator condition guided HIV testing methods. METHODS: Pilot interventions included combined HIV/HCV testing in a dermatovenerology clinic and a clinic for addictive disorders in Lithuania; Increasing HIV testing rates in a tuberculosis clinic in Romania by introducing a patient information leaflet and offering testing for HIV/HCV/sexually transmitted infections to chemsex-users in Barcelona. Methods for implementing indicator condition guided HIV testing were adapted to include integrated testing. Testing data were collected retrospectively and prospectively. Staff were trained in all settings, Plan-do-study-act cycles frequently performed and barriers to implementation reported. RESULTS: In established indicator conditions, HIV absolute testing rates increased from 10.6 to 71% in the dermatovenerology clinic over an 18 months period. HIV testing rates improved from 67.4% at baseline to 94% in the tuberculosis clinic. HCV testing was added to all individuals in the dermatovenerology clinic, eight patients of 1701 tested positive (0.47%). HBV testing was added to individuals with sexually transmitted infections with a 0.44% positivity rate (2/452 tested positive). The Indicator condition guided HIV testing strategy was expanded to offer HIV/HCV testing to people with alcohol dependency and chemsex-users. 52% of chemsex-users tested positive for ≥ 1 sexually transmitted infection and among people with alcohol dependency 0.3 and 3.7% tested positive for HIV and HCV respectively. CONCLUSIONS: The four pilot studies successfully increased integrated testing in health care settings, by introducing testing for HBV/HCV and sexually transmitted infections along with HIV testing for established indicator conditions and expanding the strategy to include new indicators; alcohol dependency and chemsex. HCV testing of individuals with alcohol abuse showed high positivity rates and calls for further implementation studies. Methods used for implementing indicator condition guided HIV Testing have proven transferable to implementation of integrated testing