A patient-led, peer-to-peer qualitative study on the psychosocial relationship between young adults with inflammatory bowel disease and food.

BACKGROUND: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under-supported in clinical settings and research. OBJECTIVES: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient-led research process. METHODS: Trained patient researchers conducted this study by engaging peers via semi-structured interviews and focus groups in a three-step co-design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT). RESULTS: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients. CONCLUSION: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food. PATIENT OR PUBLIC CONTRIBUTION: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer-to-peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co-lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants.

A co-designed framework to support and sustain patient and family engagement in health-care decision making.

BACKGROUND: Patient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co-design a patient and family engagement framework. METHODS: Workshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure. RESULTS: The framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement. CONCLUSION: The results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.

Understanding the motivations of patients: A co-designed project to understand the factors behind patient engagement.

BACKGROUND: Large-scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the 'patient partner' in health-care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care. METHODS: Patient co-investigators and a researcher co-designed and conducted this study. A survey was administered to patients and family members. Key informant interviews and previous research informed the development of the survey tool. The survey data were analysed using exploratory factor analysis to identify the underlying dimensions in the data. Cronbach's alpha was used to determine reliability. RESULTS: A total of 1449 individuals participated in the survey. Of these, 543 completed and 427 partially completed the survey (67% complete rate). The mean age of the respondents was 54 years. The majority of participants were female, well-educated, retired, married and lived in an urban centre. Seven motivational factors explained 65% of the total variance. Analysis of internal consistency revealed acceptable reliability for all items. The seven motivations were as follows: Self-fulfillment, Improving Healthcare, Compensation, Influence, Learning New Things, Conditional and Perks. CONCLUSION: The results of this research describe a sample of patient and family members currently engaged with health systems. We identified seven motivational factors underlying their engagement. A deeper knowledge of volunteer motivations will not only create meaningful engagement opportunities for patients, but also enable health organizations to gain from the experience of these individuals, thereby enhancing quality and sustainability of patient engagement programmes.

The voice of patients in system redesign: A case study of redesigning a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis.

BACKGROUND: The published literature demands examples of health-care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice. METHODS: This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health-care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)-centralized intake. The phenomenon of patient engagement using "patient and community engagement researchers" (PaCERs) in research and the process of redesigning centralized intake were selected as the case. In-depth evaluation of the case was undertaken through the triangulation of findings from the document review and participants' reflection on the case. RESULTS: In this case, patients and PaCERs participated in multiple activities including an initial meeting of key stakeholders to develop the project vision; a patient-to-patient PaCERs study to gather perspectives of patients with RA on the challenges they face in accessing and navigating the health-care system, and what they see as key elements of an effective system that would be responsive to their needs; the development of an evaluation framework for future centralized intake; and the choice of candidate centralized intake strategies to be evaluated. CONCLUSIONS: The described feasible multistep approach to active patient engagement in health-care system redesign contributes to an understanding of the application of this complex phenomenon in practice. Therefore, the manuscript serves as one more step towards a patient-centred health-care system that is redesigned with active patient engagement.

Patient and family engagement in Alberta Health Services: Improving care delivery and research outcomes.

Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. The AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care. This article briefly describes the role and growth of patient and family advisors, advisory groups, and the participation of advisors in research initiatives through AHS' Strategic Clinical NetworksTM. It also describes recent efforts to build AHS' patient and family engagement capacity by introducing standard patient engagement training, supporting the creation of the innovative Patient and Community Engagement Research internship program, and by developing tools to measure the impact of patient and advisors on AHS. And finally, this article provides key learnings for health leaders.

"Part of the Team": Mapping the outcomes of training patients for new roles in health research and planning.

BACKGROUND: A patient research internship (Patient and Community Engagement Research program-PaCER) was created to support a provincial commitment by Alberta Health Services' Strategic Clinical Networks™ to find new ways to engage patients in a new interdisciplinary organization to support evidence-informed improvements in clinical outcomes across the health system. OBJECTIVE: Implement and test a new research method and training curriculum to build patient capacity for engagement in health through peer-to-peer research. DESIGN: Programme evaluation using Outcome Mapping and the grounded theory method. SETTING AND PARTICIPANTS: Twenty-one patients with various chronic conditions completed one year of training in adapted qualitative research methods, including an internship where they designed and conducted five peer-to-peer inquiries into a range of health experiences. MAIN OUTCOME MEASURES: Outcomes were continually monitored and evaluated using an Outcome Mapping framework, in combination with grounded theory analysis, based on data from focus groups, observation, documentation review and semi-structured interviews (21 patient researchers, 15 professional collaborators). RESULTS: Key stakeholders indicated the increased capacity of patients to engage in health-care research and planning, and the introduction and acceptance of new, collaborative roles for patients in health research. The uptake of new patient roles in health-care planning began to impact attitudes and practices. CONCLUSIONS: Patient researchers become "part of the team" through cultural and relationship changes that occur in two convergent directions: (i) building the capacity of patients to engage confidently in a dialogue with clinicians and decision makers, and (ii) increasing the readiness for patient engagement uptake within targeted organizations.

Understanding advance care planning within the South Asian community.

BACKGROUND: Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community. OBJECTIVE: To explore perspectives of South Asian community members towards ACP. DESIGN: Peer-to-peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum. SETTING AND PARTICIPANTS: Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada. RESULTS: The concept of ACP was mostly foreign to this community and was often associated with other end-of-life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials). CONCLUSIONS: Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP.

Patient perspectives on engagement in decision-making in early management of non-ST elevation acute coronary syndrome: a qualitative study.

BACKGROUND: Surveys of patients suggest many want to be actively involved in treatment decisions for acute coronary syndromes. However, patient experiences of their engagement and participation in early phase decision-making have not been well described. METHODS: We performed a patient led qualitative study to explore patient experiences with decision-making processes when admitted to hospital with non-ST elevation acute coronary syndrome. Trained patient-researchers conducted the study via a three-phase approach using focus groups and semi-structured interviews and employing grounded theory methodology. RESULTS: Twenty patients discharged within one year of a non-ST elevation acute coronary syndrome participated in the study. Several common themes emerged. First, patients characterized the admission and early treatment of ACS as a rapidly unfolding process where they had little control. Participants felt they played a passive role in early phase decision-making. Furthermore, participants described feeling reduced capacity for decision-making owing to fear and mental stress from acute illness, and therefore most but not all participants were relieved that expert clinicians made decisions for them. Finally, once past the emergent phase of care, participants wanted to retake a more active role in their treatment and follow-up plans. CONCLUSIONS: Patients admitted with ACS often do not take an active role in initial clinical decisions, and are satisfied to allow the medical team to direct early phase care. These results provide important insight relevant to designing patient-centered interventions in ACS and other urgent care situations.

Building new roles and relationships in research: a model of patient engagement research.

PURPOSE: Patient engagement is influenced by institutional ideologies, professional attitudes and patient readiness to accept new, engaged roles. This article provides an opportunity to consider a new role for patients who are trained to conduct patient experience research using qualitative methods. METHODS: The emergence of the role of patient engagement researcher was studied using a grounded theory with 21 patients over one-year internship and 125 research participants. Data were collected using tape recordings, field notes and student assignments. These were analyzed using open and selective coding, memoing, categorizing themes. RESULTS: Patients' education level (from high school to PhD), cultural background (immigrant experience, seniors), employment (employed full or part time, receiving disability benefits or retired), age (late 30 s-75) and gender (17 women and four men) were diverse. Main categories (emancipating patient experience; qualifying for research; leading sitting down; working data together; seeding change) are organized by the dialectic of co-creation as the roles of patient and researcher merge. A theoretical model is proposed. DISCUSSION: The theoretical model provides a glimpse into the process of merging two distinct roles of patient and researcher and in the process unleashes a force for change. CONCLUSIONS: The emergence of a dialectic from polar opposite roles is difficult to locate in health or other institutions where power differentials exist but there are indications that this new role might become a template for other merged roles in patient-led medical teams.

Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium.

PURPOSE: Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field. METHODS: A 'World Café' format encouraged the exploration of three 'menu' questions' in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed. RESULTS: Sixty conference attendees participated in the 'PE Café', which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting. CONCLUSION: This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.

Patients' Use of Mobile Health for Self-management of Knee Osteoarthritis: Results of a 6-Week Pilot Study.

BACKGROUND: In a previous study, a prototype mobile health (mHealth) app was co-designed with patients, family physicians, and researchers to enhance self-management and optimize conservative management for patients with mild to moderate knee osteoarthritis (OA). OBJECTIVE: This study aims to evaluate the overall usability, quality, and effectiveness of the mHealth app prototype for aiding knee OA self-management from the perspectives of patients with OA and health care providers (HCPs). METHODS: Using methods triangulation of qualitative and quantitative data, we conducted a pilot evaluation of an mHealth app prototype that was codeveloped with patients and HCPs. We recruited adult patients aged ≥20 years with early knee OA (n=18) who experienced knee pain on most days of the month at any time in the past and HCPs (n=7) to participate. In the qualitative assessment, patient and HCP perspectives were elicited on the likeability and usefulness of app features and functionalities and the perceived impact of the app on patient-HCP communication. The quantitative assessment involved evaluating the app using usability, quality, and effectiveness metrics. Patient baseline assessments included a semistructured interview and survey to gather demographics and assess the quality of life (European Quality-of-Life 5-Dimension 5-Level Questionnaire [EQ-5D-5L]) and patient activation (patient activation measure [PAM]). Following the 6-week usability trial period, a follow-up survey assessed patients' perceptions of app usability and quality and longitudinal changes in quality of life and patient activation. Semistructured interviews and surveys were also conducted with HCPs (n=7) at baseline to evaluate the usability and quality of the app prototype. RESULTS: Interviews with patients and HCPs revealed overall positive impressions of the app prototype features and functionalities related to likeability and usefulness. Between the baseline and follow-up patient assessments, the mean EQ-5D-5L scores improved from 0.77 to 0.67 (P=.04), and PAM scores increased from 80.4 to 87.9 (P=.01). Following the 6-week evaluation, patients reported a mean System Usability Scale (SUS) score of 57.8, indicating marginal acceptability according to SUS cutoffs. The mean number of goals set during the usability period was 2.47 (SD 3.08), and the mean number of activities completed for knee OA self-management during the study period was 22.2 (SD 17.8). Spearman rank correlation (rs) calculations revealed that the follow-up PAM scores were weakly correlated (rs=-0.32) with the number of goals achieved and the number (rs=0.19) of activities performed during the 6-week usability period. HCPs reported a mean SUS score of 39.1, indicating unacceptable usability. CONCLUSIONS: This evidence-based and patient-centered app prototype represents a potential use of mHealth for improving outcomes and enhancing conservative care by promoting patient activation and patient-HCP communication regarding OA management. However, future iterations of the app prototype are required to address the limitations related to usability and quality.

Co-Design in the Development of a Mobile Health App for the Management of Knee Osteoarthritis by Patients and Physicians: Qualitative Study.

BACKGROUND: Despite a doubling of osteoarthritis-targeted mobile health (mHealth) apps and high user interest and demand for health apps, their impact on patients, patient outcomes, and providers has not met expectations. Most health and medical apps fail to retain users longer than 90 days, and their potential for facilitating disease management, data sharing, and patient-provider communication is untapped. An important, recurrent criticism of app technology development is low user integration design. User integration ensures user needs, desires, functional requirements, and app aesthetics are responsive and reflect target user preferences. OBJECTIVE: This study aims to describe the co-design process for developing a knee osteoarthritis minimum viable product (MVP) mHealth app with patients, family physicians, and researchers that facilitates guided, evidence-based self-management and patient-physician communication. METHODS: Our qualitative co-design approach involved focus groups, prioritization activities, and a pre-post quality and satisfaction Kano survey. Study participants included family physicians, patient researchers and patients with knee osteoarthritis (including previous participants of related collaborative research), researchers, key stakeholders, and industry partners. The study setting was an academic health center in Southern Alberta. RESULTS: Distinct differences exist between what patients, physicians, and researchers perceive are the most important, convenient, desirable, and actionable app functional requirements. Despite differences, study participants agreed that the MVP should be electronic, should track patient symptoms and activities, and include features customized for patient- and physician-identified factors and international guideline-based self-management strategies. Through the research process, participants negotiated consensus on their respective priority functional requirements. The highest priorities were a visual symptom graph, setting goals, exercise planning and daily tracking, and self-management strategies. The structured co-design with patients, physicians, and researchers established multiple collaborative processes, grounded in shared concepts, language, power, rationale, mutual learning, and respect for diversity and differing opinions. These shared team principles fostered an open and inclusive environment that allowed for effective conceptualization, negotiation, and group reflection, aided by the provision of tangible and ongoing support throughout the research process, which encouraged team members to question conventional thinking. Group-, subgroup-, and individual-level data helped the team reveal how and for whom perspectives about individual functional requirements changed or remained stable over the course of the study. This provided valuable insight into how and why consensus emerged, despite the presence of multiple and differing underlying rationales for functional requirement prioritization. CONCLUSIONS: It is feasible to preserve the diversity of perspectives while negotiating a consensus on the core functional requirements of an mHealth prototype app for knee osteoarthritis management. Our study sample was purposely constructed to facilitate high co-design interactivity. This study revealed important differences between the patient, physician, and researcher preferences for functional requirements of an mHealth app that did not preclude the development of consensus.

Understanding patient engagement in health system decision-making: a co-designed scoping review.

BACKGROUND: With healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance. The purpose of this study was to understand how health systems are intentionally investing in the training and skill development of patients and family members. METHODS: Patient co-investigators and researchers conducted a scoping review of the existing literature on methods adopted by healthcare systems to build the skills and capacity of patients to participate in healthcare decision-making using a recognized methodological framework. Six electronic databases were searched to identify studies. Two independent reviewers screened titles and abstracts and full-text papers for inclusion. The research team independently extracted data. Any disagreements were resolved by achieving consensus through discussion. Quantitative and qualitative content synthesis, as well as a quality assessment, was conducted. RESULTS: After eliminating duplicates, the search resulted in 9428 abstracts. Four hundred fifty-eight articles were reviewed and 15 articles were included. Four themes emerged: forums (33%), patient instructors (20%), workshops (33%), and co-design (13%). Four of the identified studies measured the impact and overall effectiveness of the respective programs. Examples of how patient and family members were supported (invested in) included advocacy training to support future involvement in engagement activities, a training program to conduct patient-led research, involvement in an immersive experience-based co-design initiative, and involvement in training pharmacy students. Overall, these studies found positive outcomes when patients and family members were recipients of these opportunities. CONCLUSIONS: The results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making.

Qualitative study to elicit patients' and primary care physicians' perspectives on the use of a self-management mobile health application for knee osteoarthritis.

OBJECTIVE: To elicit perspectives of family physicians and patients with knee osteoarthritis (KOA) on KOA, its treatment/management and the use of a mobile health application (app) to help patients self-manage their KOA. DESIGN: A qualitative study using Cognitive Task Analysis for physician interviews and peer-to-peer semistructured interviews for patients according to the Patient and Community Engagement Research (PaCER) method. SETTING: Primary care practices and patient researchers at an academic centre in Southern Alberta. PARTICIPANTS: Intentional sampling of family physicians (n=4; 75% women) and patients with KOA who had taken part in previous PaCER studies and had experienced knee pain on most days of the month at any time in the past (n=5; 60% women). RESULTS: Physician and patient views about KOA were starkly contrasting. Patient participants expressed that KOA seriously impacted their lives and lifestyles, and they wanted their knee pain to be considered as important as other health problems. In contrast, physicians uniformly conceptualised KOA as a relatively minor health problem, although they still recognised it as a painful condition that often limits patients' activities. Consequently, physicians did not regard KOA as a condition to be proactively and aggressively managed. The gap between physicians' and patients' conceptualisation of KOA and its treatment extended to the use of an app for self-management. While patients were supportive of the app, physicians were sceptical of its use and focused more on accountability and patient resources. CONCLUSIONS: The clear discord between physicians' mental models and patients' lived experience and perceived needs around KOA emphasised a gap in understanding and communication about treatment and management of KOA. As such, this preliminary and formative research will inform a codesign approach to develop an app that will act as a communications tool between patients and physicians, enabling patient-physician discussions regarding modifiable self-management options based on a patient's perspectives and needs.

Patients as partners in Enhanced Recovery After Surgery: A qualitative patient-led study.

OBJECTIVES: Explore the experience of patients undergoing colorectal surgery within an Enhanced Recovery After Surgery (ERAS) programme. Use these experiential data to inform the development of a framework to support ongoing, meaningful patient engagement in ERAS. DESIGN: Qualitative patient-led study using focus groups and narrative interviews. Data were analysed iteratively using a Participatory Grounded Theory approach. SETTING: Five tertiary care centres in Alberta, Canada, following the ERAS programme. PARTICIPANTS: Twenty-seven patients who had undergone colorectal surgery in the last 12 months were recruited through purposive sampling. Seven patients participated in a codesign focus group to set and prioritise the research direction. Narrative interviews were conducted with 20 patients. RESULTS: Patients perceived that an ERAS programme should not be limited to the perioperative period, but should encompass the journey from diagnosis to recovery. Practical recommendations to improve the patient experience across the surgical continuum, and enhance patient engagement within ERAS included: (1) fully explain every protocol, and the purpose of the protocol, both before surgery and while in-hospital, so that patients can become knowledgeable partners in their recovery; (2) extend ERAS guidelines to the presurgery phase, so that patients can be ready emotionally, psychologically and physically for surgery; (3) extend ERAS guidelines to the recovery period at home to avoid stressful situations for patients and families; (4) consider activating a programme where experienced patients can provide peer support; (5) one size does not fit all; personalised adaptations within the standardised pathway are required.Drawing upon these data, and through consultation with ERAS Alberta stakeholders, the ERAS team developed a matrix to guide sustained patient involvement and action throughout the surgical care continuum at three levels: individual, unit and ERAS system. CONCLUSION: This patient-led study generated new insights into the needs of ERAS patients and informed the development of a framework to improve patient experiences and outcomes.

Support for Living a Meaningful Life with Osteoarthritis: A Patient-to-Patient Research Study.

OBJECTIVE: This study addresses the perspectives of patients with osteoarthritis (OA) about the gap between available support and their needs, with a focus on patient experience and what is important to them. It was a key component of a research initiative to co-develop an evidence-based model for central referral from primary to specialty care for arthritis patients. METHODS: Patients with OA and trained in engagement methods used adapted qualitative methods to co-design and conduct the study. OA patients (N = 25) participated in a three-step peer-to-peer process: a focus group clarified and explored the topic ("set"), and guided the creation of the interview guide used in the second phase ("collect"). Using a collaborative analysis process, the researchers identified eight concepts that they then brought to a last focus group ("reflect"). Here, participants reviewed the findings, identifying implications for arthritis care in Alberta, Canada. RESULTS: An overarching theme of "supporting us in managing a meaningful life with OA" was underpinned by three components of quality care: (1) right knowledge-specific and detailed knowledge and information; (2) right professional support-ongoing access to health professionals with OA expertise; and (3) right professional relationship-a partnership with health professionals who help them develop and revise personal self-management plans. CONCLUSION: Peer-to-peer research informed and challenged the research team and stakeholders to consider the need for upstream support for OA patients. Results are helping to transform arthritis care, shifting the health system from an acute episodic model to one that meets the needs of the growing number of patients with chronic diseases.

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research.

INTRODUCTION: Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown. METHODS: We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and family members conducted focus groups and interviews with patients (n = 11) and families of surviving (n = 14) and deceased (n = 7) patients from 13 ICUs in Alberta Canada, and analyzed data using conventional content analysis. Separate blinded qualitative researchers conducted an independent analysis. RESULTS: Participants described three phases in the patient/family "ICU journey"; admission to ICU, daily care in ICU, and post-ICU experience. Admission to ICU was characterized by family shock and disorientation with families needing the presence and support of a provider. Participants described five important elements of daily care: honoring the patient's voice, the need to know, decision-making, medical care, and culture in ICU. The post-ICU experience was characterized by the challenges of the transition from ICU to a hospital ward and long-term effects of critical illness. These "ICU journey" experiences were described as integral to appropriate interactions with the care team and comfort and trust in the ICU, which were perceived as essential for a community of caring. Participants provided suggestions for improvement: 1) provide a dedicated family navigator, 2) increase provider awareness of the fragility of family trust, 3) improve provider communication skills, 4) improve the transition from ICU to hospital ward, and 5) inform patients about the long-term effects of critical illness. Analyses by independent qualitative researchers identified similar themes. CONCLUSIONS: Patient and family member-led research is feasible and can identify opportunities for improving care.

The language of recovery: how effective communication of information is crucial to restructuring post-stroke life.

BACKGROUND: Providing appropriate and effective information to people with stroke and their families has been identified as a key component to successful practice. Researchers continue to focus on "lack of information" as being the lack of specific technical medical information rather than the communication of practical knowledge and how people use that knowledge to restructure life after stroke. To meet patients' expectations and achieve better outcomes in stroke, professionals need access to communication theory, research, and training. OBJECTIVES: Improve stroke communication systematically. METHOD: This article will examine stroke communication using a three-part framework: 1. Utilize theory to clearly conceptualize how communication influences stroke outcome. 2. Identify components and mechanisms of communication content to positively influence stroke outcome. 3. Develop goals and strategies for putting content skills into stroke communication practice. CONCLUSION: Relatively little is known about the content and structure of informal communication transactions between stroke survivors, families, and health care professionals and how they accommodate (or resist) realignment of identity after stroke. The professional discourse attempts to ensure realistic expectations of recovery whereas stroke survivors and families complain about the negative discourses, how possibilities for life after stroke are presented, and the hopelessness that this creates. More research is required into how these different discourses affect outcomes.

Communication in stroke: the overlooked rehabilitation tool.

People who have had a stroke and their families at every stage post-stroke state that they require more information. They wish to be informed about all aspects of their stroke and their care and be involved in decision-making. Several evidence-based reviews have found that information provision in stroke is inadequate and that future work should address the expressed needs of stroke survivors and families. Utilising research and personal experience as the spouse of a stroke survivor, this author makes a plea for better communication in stroke. The first steps to achieve this include the following. (i) Acknowledgement that stroke communication needs to be improved and that improved communication could affect outcomes not only for stroke survivors and their families but for professionals as well. (ii) The content of post-stroke communication needs to be delineated. Professionals have conflicting opinions on how to talk about uncertain recovery and a life post-stroke that includes disability. (iii) Proposing that stroke communication must support identity. Communication in stroke needs to be improved and communication should support identity.