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

Client–nurse Relationships in Home-based Palliative Care: A Critical Analysis of Power Relations

Aim: To elicit an in-depth understanding of the sources of power and how power is exercised within client–nurse relationships in home-based palliative care. Background: As in all social relations, power is present within client–nurse relationships. Although much research has focused on interpersonal relationships in nursing, the concept of power within the client–nurse relationship in palliative care settings has not been extensively investigated. Methods: Applying a critical lens, secondary qualitative data analysis was conducted. Seventeen nurse and 16 client transcripts from a primary study were selected for secondary data analysis. These 33 transcripts afforded theme saturation, which allowed for both commonalities and differences to be identified. Data analysis involved analytic coding. Results: Study findings help make explicit the underlying power present in the context of home-based palliative care and how this power is used and potentially abused. In analysing the sources and exercise of power, the linkage between macro and micro levels of power is made explicit, as nurses functioned within a hierarchy of power. The findings suggest that educational/occupational status continues to be a source of power for nurses within the relationship. However, nurses also experience powerlessness within the home care context. For clients, being able to control one\u27s own life is a source of power, but this power is over-shadowed by the powerlessness experienced in relationships with nurses. The exercise of power by clients and nurses creates experiences of both liberation and domination. Conclusions: Nurses who are willing to reflect on and change those disempowering aspects of the client-nurse relationship, including a harmful hierarchy, will ultimately be successful in the health promotion of clients in home-based palliative care. Additionally, it should be recognized that nurses work within a specific health system context and, therefore, their practice is influenced by policies and funding models implemented at various levels of the health care system. Relevance to clinical practice: The insights gained through this investigation may assist nurses and other health professionals in reflecting on and improving practices and policies within home-based palliative care and within home care in general