Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson's disease versus health care professionals: a concept mapping study.

BACKGROUND: Focusing clinical investigations on outcomes that are meaningful from an end-user perspective is central in clinical research, particularly in chronic disorders such as Parkinson's disease (PD). However, little is known about how end-users such as people with PD (PwPD) and health care professionals (HCPs) view and prioritize therapeutic outcomes. PURPOSE: To compare the perspectives of PwPD and HCPs regarding prioritized areas for outcome measurement in clinical PD trials. METHODS: Concept mapping was used to identify prioritized outcomes (statements) through focus groups (n = 27; 12 PwPD, 12 HCPs, three researchers), statement sorting and importance rating (n = 38; 19 PwPD, 19 HCPs), followed by quantitative (multidimensional scaling, cluster analysis, procrustes analysis) and qualitative analysis. RESULTS: Sorting of 99 statements by PwPD and HCPs yielded 2D maps (PwPD/HCPs stress values, 0.31/0.21) with eight clusters per group. The correlation between raw sorting data of PwPD and HCPs was 0.80, and there was a significant concordance (m 12 = 0.53; P < 0.001; i.e., r = 0.68) between the spatial arrangements in their respective maps. Qualitatively, the maps from the two groups represented partially different perspectives. There were no significant differences between PwPD and HCP item importance ratings. CONCLUSION: Although similarities dominated, there were differences in how the relationships between items were perceived by the two groups, emanating from different perspectives, i.e., the clinical biomedical ("disease") versus the lived experience ("illness"). This study illustrates the clinical importance of attention to the perspective of PwPD; taking this into account is likely to provide evidence from clinical investigations that are meaningful and interpretable for end-users.

Communicating with individuals receiving home mechanical ventilation: the experiences of key communication partners.

PURPOSE: The aim of the study was to explore the communication experiences of key communications partners (CPs) of individuals receiving home mechanical ventilation (HMV), with particular emphasis on the possibilities, difficulties and limitations CPs experienced in communication, possible support given to facilitate communication and exploring what made a skilled communicator. METHOD: A qualitative research design using interviews was used. The participants included 19 key CPs of individuals receiving HMV. RESULTS: The analysis resulted in five themes: Encountering communication limitations, Functional communication strategies, Being a communication facilitator, Role insecurity and Emotional reactions and coping. The findings revealed that CPs needed to develop partly new reference frames for communication. In particular, participants emphasised the need to understand and interpret subtle details in the communicative interaction. CONCLUSIONS: The findings are discussed in the light of previous research, in particular an earlier study exploring another perspective; the ventilator-supported individuals' experiences of communication. Issues relating to the educational needs of CPs of individuals receiving HMV are discussed. The results are intended to enhance understanding of the challenges that individuals receiving HMV and their CPs face with communication, which should be of relevance not only to speech therapists, but for all healthcare practitioners in the field of HMV.

Communication experience of individuals treated with home mechanical ventilation.

BACKGROUND: Mechanical ventilatory support seriously affects speaking and communication, and earlier studies show that many ventilator-supported patients experience difficulties and frustration with their speech and voice production. Since there is a growing number of individuals who require mechanical ventilatory support and there is a paucity of studies that examine ventilator-supported communication, this research area needs to be developed to ensure adequate health services for this population. The present study focused on ventilator-supported communication from the point of view of individuals receiving home mechanical ventilation (HMV). AIMS: The specific aim was to examine the communication experience of individuals receiving HMV. METHODS & PROCEDURES: A qualitative approach was adopted for this study, and data were collected by means of semi-structured interviews. Qualitative content analysis was used to structure, condense and interpret the data. The participants were recruited from the National Respiratory Centre (NRC) in Sweden, and included 19 individuals receiving HMV. OUTCOMES & RESULTS: The main theme A long and lonely struggle to find a voice and six subthemes detailing different facets of it emerged from data analysis: Managing changed speech conditions, Prioritising voice, A third party supporting communication, Using communication to get things done, Depending on technology, and Facing ignorance. Important aspects influencing the ventilator-supported individuals' communicative performance (speech, support from others and technological solutions) are discussed. CONCLUSIONS & IMPLICATIONS: The study revealed that healthcare practitioners involved in the care of individuals receiving HMV need to improve their understanding and knowledge of issues related to ventilator-supported communication. Individuals receiving HMV encounter a needlessly long and lonely struggle to achieve effective communication. They face numerous challenges regarding their communication, and they need to be heard in both literal and figurative senses. To overcome these challenges they need support from competent healthcare practitioners and personal assistants, and continuous follow-up by speech and language therapists tailoring communicative solutions to fit individual needs.

The xenotransplantation narratives of nine type 1 diabetic patients with renal failure.

Within the research project ''Treatment of Diabetes by Transplantation of Porcine Islets'' that was run by the Swedish Xenoislet Transplantation Network between 1998 and 2003, a partner project called ''Cultural Perspectives on Xenotransplantation'' investigated attitudes toward xenotransplantation development among the patients and their relatives as well as the medical personnel at a transplantation clinic in Sweden. In-depth interviews were done with 37 individuals: nurses, doctors, researchers, patients, and relatives. All interviews were taped and transcribed verbatim. In this presentation the interviews with the nine type 1 diabetic patients with renal failure that took part in the project are focused. The personal and embodied narratives of these nine patients illustrate the ambivalent situation of individuals who are both patients and (potential) experimental subjects simultaneously. Both as actual practice and as biomedical information xenotransplantation research triggers a certain kind of cultural identity of the chronically ill patients--an identity related to how the patients ''translate'' scientific information and, at the same time, counter risk and uncertainty as well as promises of remedy. A central dimension in this cultural identity is a positive but still reluctant embodied attitude toward what spearhead science can bring about.