The interactive work of narrative elicitation in person-centred care: Analysis of phone conversations between health care professionals and patients with common mental disorders.

INTRODUCTION: Narratives play a central part in person-centred care (PCC) as a communicative means of attending to patients' experiences. The present study sets out to explore what activities are performed and what challenges participants face in the interactive process of narrative elicitation, carried through in patient-professional communication in a remote intervention based on PCC. METHODS: Data were gathered from a randomized controlled trial (RCT) in a Swedish city where health care professionals (HCPs) conducted remote PCC for patients on sick leave due to common mental disorders. A sample of eleven audio-recorded phone conversations between HCPs and patients enroled in the RCT were collected and subjected to conversation analysis. RESULTS: Three interactive patterns in narrative elicitation were identified: Completed narrative sequences driven by the patient, question-driven narrative sequences guided by the HCP, and narrative sequences driven as a collaborative project between the patient and the HCP. In the question-driven narrative sequences, communication was problematic for both participants and they did not accomplish a narrative. In the other two patterns, narratives were accomplished but through various collaborative processes. CONCLUSION: This study provides insight into what challenges narrative elicitation may bring in the context of a remote PCC intervention and what interactive work patients and HCP need to engage in. Importantly, it also highlights tensions in the ethics of PCC and its operationalization, if the pursuit of a narrative is not properly balanced against the respect for patients' integrity and personal preferences. Our findings also show that narrative elicitation may represent an interactive process in PCC in which illness narratives are jointly produced, negotiated and transformed. PATIENT OR PUBLIC CONTRIBUTION: Stakeholders, including patient representatives, were involved in the design of the main study (the RCT). They have been involved in discussions on research questions and dissemination throughout the study period. They have not been involved in conducting the present study.

Transforming trash to treasure Cultural ambiguity in foetal cell research.

BACKGROUND: Rich in different kind of potent cells, embryos are used in modern regenerative medicine and research. Neurobiologists today are pushing the boundaries for what can be done with embryos existing in the transitory margins of medicine. Therefore, there is a growing need to develop conceptual frameworks for interpreting the transformative cultural, biological and technical processes involving these aborted, donated and marginal embryos. This article is a contribution to this development of frameworks. METHODS: This article examines different emotional, cognitive and discursive strategies used by neurobiologists in a foetal cell transplantation trial in Parkinson's disease research, using cells harvested from aborted embryos. Two interviews were analysed in the light of former observations in the processing laboratories, using the anthropologist Mary Douglas's concept of pollution behaviour and the linguist, philosopher, psychoanalyst and feminist Julia Kristeva's concept of the abjective to explain and make sense of the findings. RESULTS: The findings indicate that the labour performed by the researchers in the trial work involves transforming the foetal material practically, as well as culturally, from trash to treasure. The transformation process contains different phases, and in the interview material we observed that the foetal material or cells were considered objects, subjects or rejected as abject by the researchers handling them, depending on what phase of process or practice they referred to or had experience of. As demonstrated in the analysis, it is the human origin of the cell that makes it abjective and activates pollution discourse, when the researchers talk of their practice. CONCLUSIONS: The marginal and ambiguous status of the embryo that emerges in the accounts turns the scientists handling foetal cells into liminal characters in modern medicine. Focusing on how practical as well as emotional and cultural strategies and rationalizations of the researchers emerge in interview accounts, this study adds insights on the rationale of practically procuring, transforming and utilizing the foetal material to the already existing studies focused on the donations. We also discuss why the use and refinement of a tissue, around which there is practical consensus but cultural ambiguity, deserves further investigation.

A state-of-the-art review of direct observation tools for assessing competency in person-centred care.

BACKGROUND: Direct observation is a common assessment strategy in health education and training, in which trainees are observed and assessed while undertaking authentic patient care and clinical activities. A variety of direct observation tools have been developed for assessing competency in delivering person-centred care (PCC), yet to our knowledge no review of such tools exists. OBJECTIVE: To review and evaluate direct observation tools developed to assess health professionals' competency in delivering PCC. DESIGN: State-of-the-art review DATA SOURCES: Electronic literature searches were conducted in PubMed, ERIC, CINAHL, and Web of Science for English-language articles describing the development and testing of direct observation tools for assessing PCC published until March 2017. REVIEW METHODS: Three authors independently assessed the records for eligibility. Duplicates were removed and articles were excluded that were irrelevant based on title and/or abstract. All remaining articles were read in full text. A data extraction form was developed to cover and extract information about the tools. The articles were examined for any conceptual or theoretical frameworks underlying tool development and coverage of recognized PCC dimensions was evaluated against a standard framework. The psychometric performance of the tools was obtained directly from the original articles. RESULT: 16 tools were identified: five assessed PCC holistically and 11 assessed PCC within specific skill domains. Conceptual/theoretical underpinnings of the tools were generally unclear. Coverage of PCC domains varied markedly between tools. Most tools reported assessments of inter-rater reliability, internal consistency reliability and concurrent validity; however, intra-rater reliability, content and construct validity were rarely reported. Predictive and discriminant validity were not assessed. CONCLUSION: Differences in scope, coverage and content of the tools likely reflect the complexity of PCC and lack of consensus in defining this concept. Although all may serve formative purposes, evidence supporting their use in summative evaluations is limited. Patients were not involved in the development of any tool, which seems intrinsically paradoxical given the aims of PCC. The tools may be useful for providing trainee feedback; however, rigorously tested and patient-derived tools are needed for high-stakes use.

Effects of a person-centred telephone-support in patients with chronic obstructive pulmonary disease and/or chronic heart failure - A randomized controlled trial.

PURPOSE: To evaluate the effects of person-centred support via telephone in two chronically ill patient groups, chronic obstructive pulmonary disease (COPD) and/or chronic heart failure (CHF). METHOD: 221 patients ≥ 50 years with COPD and/or CHF were randomized to usual care vs. usual care plus a person-centred telephone-support intervention and followed for six months. Patients in the intervention group were telephoned by a registered nurse initially to co-create a person-centred health plan with the patient and subsequently to discuss and evaluate the plan. The primary outcome measure was a composite score comprising General Self-Efficacy (GSE), re-hospitalization and death. Patients were classified as deteriorated if GSE had decreased by ≥ 5 points, or if they had been re-admitted to hospital for unscheduled reasons related to COPD and/or CHF or if they had died. RESULTS: At six-month follow-up no difference in the composite score was found between the two study groups (57.6%, n = 68 vs. 46.6%, n = 48; OR = 1.6, 95% CI: 0.9-2.7; P = 0.102) in the intention-to-treat analysis (n = 221); however, significantly more patients in the control group showed a clinically important decrease in GSE (≥ 5 units) (22.9%, n = 27 vs. 9.7%, n = 10; OR = 2.8, 95% CI: 1.3-6.0; P = 0.011). There were 49 clinical events (14 deaths, 35 re-admissions) in the control group and 41 in the intervention group (9 deaths, 32 re-admissions). Per-protocol analysis (n = 202) of the composite score showed that more patients deteriorated in the control group than in the intervention group (57.6%, n = 68 vs. 42.9%, n = 36; OR = 1.8, 95% CI 1.0-3.2; P = 0.039). CONCLUSION: Person-centred support via telephone mitigates worsening self-efficacy without increasing the risk of clinical events in chronically ill patients with CHF and/or COPD. This indicates that a patient-healthcare professional partnership may be established without the need for face-to-face consultations, even in vulnerable patient groups. TRIAL REGISTRATION: ISRCTN.com ISRCTN55562827.

Patient contributions during primary care consultations for hypertension after self-reporting via a mobile phone self-management support system.

OBJECTIVE: This paper reports on how the clinical consultation in primary care is performed under the new premises of patients' daily self-reporting and self-generation of data. The aim was to explore and describe the structure, topic initiation and patients' contributions in follow-up consultations after eight weeks of self-reporting through a mobile phone-based hypertension self-management support system. DESIGN: A qualitative, explorative study design was used, examining 20 audio- (n = 10) and video-recorded (n = 10) follow-up consultations in primary care hypertension management, through interaction analysis. Clinical trials registry: ClinicalTrials.gov NCT01510301. SETTING: Four primary health care centers in Sweden. SUBJECTS: Patients with hypertension (n = 20) and their health care professional (n = 7). RESULTS: The consultations comprised three phases: opening, examination and closing. The most common topic was blood pressure (BP) put in relation to self-reported variables, for example, physical activity and stress. Topic initiation was distributed symmetrically between parties and BP talk was lifestyle-centered. The patients' contributed to the interpretation of BP values by connecting them to specific occasions, providing insights to the link between BP measurements and everyday life activities. CONCLUSION: Patients' contribution through interpretations of BP values to specific situations in their own lives brought on consultations where the patient as a person in context became salient. Further, the patients' and health care professionals' equal contribution during the consultations showed actively involved patients. The mobile phone-based self-management support system can thus be used to support patient involvement in consultations with a person-centered approach in primary care hypertension management Key points The clinical consultation is important to provide opportunities for patients to gain understanding of factors affecting high blood pressure, and for health care professionals to motivate and promote changes in life-style. This study shows that self-reporting as base for follow-up consultations in primary care hypertension management can support patients and professionals to equal participation in clinical consultations. Self-reporting combined with increased patient-health care professional interaction during follow-up consultations can support patients in understanding the blood pressure value in relation to their daily life. These findings implicate that the interactive mobile phone self-management support system has potential to support current transformations of patients as recipients of primary care, to being actively involved in their own health.

Co-designing technologies in the context of hypertension care: Negotiating participation and technology use in design meetings.

Research Interest: In this article, we take an interest in the new kind of relation that has been claimed to be urgently required between health services and patients. Co-production of health services implies fundamental changes in the ways medical care is organized and delivered. Usually, technologies are put forth as potential solutions to problems that might occur when establishing such new relations. AIMS: The aim of this study is to scrutinize how different perspectives were brought into the discussions as the concrete design and use of a mobile phone application were introduced, and how participants anticipated and negotiated their own participation in the design project. METHODS: This article reports results from an explorative study of a co-design project in hypertension care wherein health professionals and patients were invited to co-design some features of the application they were later to use. RESULTS/CONCLUSIONS: The study shows that new practices of self-treatment are not likely to take place without the cooperation of patients, since they are to provide the observational data necessary for the professionals' work. The negotiations are needed to balance patients' concerns of being monitored by technology and their needs of being in control of their everyday lives and activities.

Phases in development of an interactive mobile phone-based system to support self-management of hypertension.

Hypertension is a significant risk factor for heart disease and stroke worldwide. Effective treatment regimens exist; however, treatment adherence rates are poor (30%-50%). Improving self-management may be a way to increase adherence to treatment. The purpose of this paper is to describe the phases in the development and preliminary evaluation of an interactive mobile phone-based system aimed at supporting patients in self-managing their hypertension. A person-centered and participatory framework emphasizing patient involvement was used. An interdisciplinary group of researchers, patients with hypertension, and health care professionals who were specialized in hypertension care designed and developed a set of questions and motivational messages for use in an interactive mobile phone-based system. Guided by the US Food and Drug Administration framework for the development of patient-reported outcome measures, the development and evaluation process comprised three major development phases (1, defining; 2, adjusting; 3, confirming the conceptual framework and delivery system) and two evaluation and refinement phases (4, collecting, analyzing, interpreting data; 5, evaluating the self-management system in clinical practice). Evaluation of new mobile health systems in a structured manner is important to understand how various factors affect the development process from both a technical and human perspective. Forthcoming analyses will evaluate the effectiveness and utility of the mobile phone-based system in supporting the self-management of hypertension.