Support Patient Participation Research Articles

Competing discourses as barriers to change in rehabilitation nursing: a discourse analysis.

The power of action research to create change by anchoring research results in practice was challenged in an action research project at a specialized rehabilitation unit for persons with acquired spinal cord injury. Despite the co-researchers' new insights, approaches, and actions supporting patient participation, it was not possible to change the basic conditions for the practicing of nursing. We aimed to raise awareness of the mechanisms that govern barriers by exploring these barriers as experienced by nurses in their effort to change their practice to improve patient participation. We used Fairclough's critical discourse analysis drawing on Foucault's practical systems; ethics (identity, relation to oneself), power (action, relation to others), and knowledge (representation, aspects of the world), which he combines with discourse-analytical concepts. Our discourse analysis of the empirical data at micro-level uncovers the nature of barriers to change in practice. In addition, our analysis at macro-level unveils how these practices are embedded in larger historical, societal, and institutional discourses. This identified two current discourses: a biomedical discourse and a biopsychosocial discourse. In the light of these two discourses, the nurses at micro-level saw themselves as strong agents for the best rehabilitation by acting in accordance with the biopsychosocial discourse. But they were unable to find the time and space to do so due to tasks, structures, and practices specified by an organization dominated by the biomedical discourse.

Caregiver Support Role in Occupational Therapy Video Telehealth: A Scoping Review.

Caregiver involvement may facilitate patient participation in occupational therapy (OT) video telehealth. However, little is known about the extent to which caregivers participate and what they do. This scoping review aims to, 1) describe the caregiver role supporting patient participation in OT video telehealth, and, 2) identify barriers and facilitators to caregiver involvement. Findings reveal caregiver involvement in a range of OT evaluation and intervention processes, with details on what caregivers did overall lacking. Barriers and facilitators are also described. This study underscores the need for clear and robust descriptions of caregiver participation to increase best practices in video telehealth.

Barriers to and enablers of the promotion of patient and family participation in primary healthcare nursing in Brazil, Germany and Spain: A qualitative study.

Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self-management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses'efforts to support patients'participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting. To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care. We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germanyand Spain. The data was analyzed using thematic coding. We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a 'biomedical' approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation. Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitionersand PHC planners. PHC nurses should be trained in communicative competencewhen discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task. This study is part of a research project associated with the research network 'forges: User-oriented care: Promotion of health in the context of chronic diseases and care dependency'. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated.

Primary care provider perceptions of patient participation in a multi-cancer early detection trial.

e13607 Background: Randomized clinical trials of multi-cancer early detection (MCED) tests are being planned, and primary care providers (PCPs) are likely to encounter patients who are considering participation. Little information has been reported about provider support for patient participation in such trials. Methods: We surveyed PCPs from 4 practices in a large health system to learn about their views on patient participation in a hypothetical MCED test trial. The PCPs received a link to view a patient-oriented infographic that described a trial in which participants would undergo serial blood draws for MCED testing and would be randomly assigned either to standard care or to receive MCED test results and follow-up, as needed. After viewing the infographic, respondents were asked to complete a brief survey that included statements related to factors that would affect their receptivity to patient participation in the trial, using a 5-point Likert type response scale that ranged from 1 = Strongly Disagree to 5 = Strongly Agree. The survey also included a single item that asked respondents if they would support patient participation in the trial and provided an opportunity to report the main reason for their answer. Finally, the survey contained a background characteristics section. We computed frequency distributions of survey responses. Results: Twenty-seven of 37 (73%) invited primary care providers completed the survey. About half of the respondents were women and two thirds were white; 81% were physicians while 19% were nurse practitioners, 54% were in practice for less than 20 years, all were board certified, and 74% had a hospital affiliation. Receptivity scores regarding a future MCED trial were high, with a mean of 3.8 and standard deviation of 0.6. Overall, 25 providers (93%) reported that they would support patient participation in an MCED test trial. The most commonly reported reasons for supporting patient participation were the belief that early cancer detection is important and the belief that research to develop new cancer screening tests is needed. The most commonly cited reasons for not supporting participation were concern about managing patients diagnosed with cancer in the trial and worry that trial participants would require too many practice resources. Conclusions: The overwhelming majority of respondents supported patient participation in an MCED test trial, but many were concerned about trial impact on their capacity to meet patient needs. Further research is needed in a larger study to validate these results and learn more about factors likely to influence PCP support for patient participation in MCED test trials and actual participation.

Exploring sustainable care pathways - a scoping review

BackgroundPatients with mental health problems experience numerous transitions into and out of hospital.AimThe review studies assessing clinical care pathways between psychiatric hospitalization and community health services.MethodsWe used publications between 2009–2020 to allow a broad scoping review of the published research. Sixteen review-articles were identified, 12 primary studies were chosen, both on care pathways in the transition between psychiatric hospital and community.ResultsOrganizational issues: Systems and procedures to ensure clear responsibilities and transparency at each stage of the pathways of care. Resources: Information-technology in objectively improving patient outcome. Information/documentation: Providing patients with adequate structured information and documented plans at the appropriate time. Patient/families: Continuous collaborative decision-making. Clinical care and teamwork: Collaboration between mental health and other professionals to guarantee that planned activities meet patient need. Ethical issues: Respectful communication and patient-centred, non-humiliating care.ConclusionsSystem and procedures ensure clear responsibilities and transparency. Information technology support decision-making and referral and objectively improve patient outcomes in care pathways. Collaboration between mental health and other professionals guarantee that planned activities meet patients’ needs along with regular meetings sharing key information. Around-the-clock ambulant-teams important to transition success. Informed-shared decision-making between parties, support patient participation and respectful communication.

Occupational Therapy Practitioner Perspectives of the Role of Caregivers in Video Telehealth.

The current article examines the role of caregivers to support patient participation in video telehealth, using data from interviews with occupational therapy practitioners at Veterans Health Administration. We found that caregiver participation allowed patients who might otherwise not be able to access video telehealth to do so, with patient factors, such as low technical literacy, contributing to caregiver involvement. In addition, caregiver participation varied by type of task performed. There were also benefits and barriers to caregiver participation. This study enhances our understanding of caregivers' role enabling patients to access video telehealth, which has implications for nursing professionals. [Journal of Gerontological Nursing, 48(10), 15-20.].

Caregivers’ Role in Supporting Occupational Therapy Video Telehealth: A Qualitative Study

Background Video telehealth increases access to care for patients living in rural communities and those whose functional status makes attending brick-and-mortar health care visits difficult. This includes many older adults whose accumulated health risks, due to age and chronic illness, may result in higher rates of disability. Older adults underutilize video visits due to decreased digital literacy and age-related impairments. While caregiver assistance may ameliorate such barriers, little is known about the role of caregivers to support patient participation in video telehealth, particularly for more hands-on clinical services such as occupational therapy (OT). Objective This project seeks to explore the role of caregivers to facilitate video telehealth from the perspective of occupational therapy (OT) practitioners at Veterans Health Administration, the largest integrated health care system in the United States. Methods In early 2021, we conducted semistructured interviews with Veterans Health Administration occupational therapy practitioners (n=27) about their experiences using video telehealth to deliver OT services. During the interviews, we asked OT practitioners to describe caregiver involvement in video telehealth. We analyzed the responses related to caregiver participation to better understand the caregivers’ support role in OT video telehealth sessions. Results Interview responses related to caregivers’ participation in video telehealth led to the following three broad findings: (1) caregivers participate in video telehealth sessions to varying degrees and fill a variety of technical and clinical roles; (2) the presence of caregivers allows patients who might otherwise not be able to access telehealth to do so; and (3) there are benefits and barriers to caregiver participation. Related to caregivers’ support roles, our findings revealed that caregivers assist with technical tasks such as logging onto the computer and operating the device to enable visualization during the sessions. The clinical tasks caregivers assist with include communicating with the clinician and taking measurements during home safety evaluations. Factors that appear to contribute to caregiver involvement include patients’ low technical literacy and age- or health-related impairments, such as hearing and vision loss, decreased mobility, or cognitive changes. Perceived benefits included increased caregiver involvement in patient care, while barriers included lack of available caregivers to assist. Conclusions This study improves our understanding of the caregivers’ role supporting patient participation in video telehealth. This foundational work suggests that more studies examining caregiver participation are needed, particularly larger studies and those from the perspectives of caregivers and patients. Elaborating caregiver participation in video telehealth should enable the identification of strategies to facilitate telehealth service delivery, particularly for patients who continue to face access challenges in a post–COVID-19 landscape. Conflict of Interest None declared.

A Nurse-Led Multimedia Intervention to Increase Patient Participation in Recovery After Knee Arthroplasty: Hybrid Type II Implementation Study.

BackgroundAdvances in digital technology and the use of multimedia platforms to deliver information provide clinicians with a unique opportunity to develop innovative ways to consistently provide high-quality, accessible, and evidence-based information to support patient participation. Introducing new technologies into everyday acute care clinical practice can be difficult.ObjectiveThe aim of this paper was to provide a description of an implementation strategy and the subsequent evaluation undertaken to examine the contextual factors important to the successful adoption of new technology by nurses in the context of acute postoperative care.MethodsImplementation of the intervention and process evaluation was undertaken in 3 phases: phase 1, preimplementation stakeholder engagement and identification of barriers and enablers to implementation; phase 2, supported implementation of the intervention; and phase 3, evaluation of uptake, usability, and acceptability of the intervention in clinical practice.ResultsThe outcomes of the implementation of the multimedia intervention in the context of acute postoperative care were positive. Of the 104 patients in the intervention group, 103 (99%) received the intervention. All 103 patients completed the 8-item intervention questionnaire and 93.3% (97/103) were interviewed on day 3 to evaluate usability, uptake, and acceptability. Of these 97 patients, almost all (n=94, 91%) found the program easy to use and most (n=64, 62%) could view the MyStay Total Knee Replacement program as often as they wanted. The findings also suggest that the time to implement the program was minimal (5-10 minutes). Collaboration with nurses and patients before and during implementation to identify potential barriers to successful implementation of the intervention was essential to develop timely strategies to overcome these barriers. To ensure end-user engagement, careful consideration was given to nurses’ views on who was responsible for facilitating this intervention.ConclusionsThe findings provide evidence that the structured implementation of the multimedia intervention was robust and successful in terms of patient participant recruitment and application; however, it was difficult to assess the level of engagement by nurse clinicians with the program.Trial RegistrationAustralian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12614000340639; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12614000340639

NEW PARADIGMS IN CLINICAL STUDY DESIGN: PATIENT AND SPONSOR PERSPECTIVES FROM A FULLY REMOTE STUDY UTILIZING DIGITAL TECHNOLOGIES

TOPIC: Obstructive Lung Diseases TYPE: Original Investigations PURPOSE: Digital technologies offer opportunities to support patients, sites, and sponsors during clinical study preparation/conduct. ENERGITO 2 Digital Health (DH), a Phase IV, fully remote, exploratory study, provided insights related to proactive, sponsor strategic planning and patient participation perspectives that may enhance future clinical research. METHODS: COPD patients aged ≥40 y, smoking history of >10 pack-years, postbronchodilator FEV1 ≥30% to <80% predicted, postbronchodilator FEV1/FVC <70%, internet access, smartphone proficiency, and prior spirometry experience were randomized to a 12-week, double-blind study (tiotropium/olodaterol [T/O] 5/5 μg QD or fluticasone propionate/salmeterol [FP/SAL] 250/50 μg BID). All visits were completed remotely via telemedicine (e-Visit); all procedures—including electronic informed consent, and digital spirometry—were completed entirely remotely using digital technology. To support patient participation, remote/e-Visits could be converted to traditional clinic visits. Investigational medicinal product (IMP) was delivered directly to patients. Lung function and safety were assessed at each e-Visit. Six patient surveys were conducted during the study; patient responses ranged from “very easy to difficult; very satisfied to unsatisfied; very comfortable to uncomfortable.“ A patient focus group was conducted post-study completion. RESULTS: Of 18 patients enrolled, 11 (6 men/5 women; mean±SD age, 66.0±7.27 y) were randomized from 1 US site to T/O (n=6) or FP/SAL (n=5). Sponsor learnings from a protocol simulation were incorporated into the study design to support customer centricity and study conduct in scalability and process. Patient survey responses were generally favorable. Patients reported receiving direct IMP at home was easy and were satisfied with the study drug video training; spirometer training video was very easy to follow—most indicated that performing remote spirometry was easy. Few patients identified technical issues with the invitation process, negative experiences with IMP supplies, occasional spirometer nonfunctioning, and variable audio quality at e‑Visits. The patient focus group provided valuable feedback for future patient-centric, remote clinical trial planning/conduct: offering the flexibility of a combined personal/virtual engagement approach to enhance the patient experience, increased personal connection between clinic visits, and use of supplemental information videos. CONCLUSIONS: ENERGITO 2 DH demonstrated the feasibility of conducting a clinical study remotely in accordance with regulatory guidelines. Technology utilization and proactive and strategic integration of additional operational elements enabled patients to participate remotely as confirmed by patients during and post study completion. CLINICAL IMPLICATIONS: Data support the value of DH solutions in clinical development and use of remote supervised/unsupervised spirometry. DISCLOSURES: No relevant relationships by Sharon Attick, source=Web Response Employee relationship with Boehringer Ingelheim Please note: 1996 to 2021 Added 05/05/2021 by Joanne Franceschina, source=Web Response, value=Salary Principal Investigator relationship with Boehringer-Ingelheim Please note: January 2005 to December 2020 Added 04/30/2021 by Glenn Giessel, source=Web Response, value=Grant/Research Support Employee relationship with Boehringer Ingelheim Please note: 1997-2021 Added 05/05/2021 by Alan Hamilton, source=Web Response, value=Salary No relevant relationships by Patricia Harris, source=Admin input No relevant relationships by John Turner, source=Web Response

Results from a Theory-Guided Survey to Support Breast Cancer Trial Participation: Barriers, Enablers, and What to Do about them.

Background: Ensuring adequate, informed, and timely participation in clinical trials is a multifactorial problem. We have previously developed a systematic, tailorable survey development approach that is informed by theory, can identify barriers and enablers to participation, and can suggest recruitment strategies to address these issues. In this study, we surveyed subscribers to the Canadian Breast Cancer Network (CBCN) in order to identify a comprehensive list of theory-informed barriers and enablers relevant to participation in a hypothetical breast cancer trial. Methods: We developed and conducted an online survey of breast cancer patients informed by the Theoretical Domains Framework and designed to determine previous experience with clinical trials, knowledge about clinical trials, and importance of a comprehensive list of barriers and enablers to trial participation. Participants were contacted by email or through social media. Results: From 2451 subscribers of the CBCN, we received 244 responses and 210 completed surveys (244/2451 or 9.9% participation, 210/244 or 86.1% completion). A total of 38% of respondents indicated experience in trial participation, but 83% indicated confidence in their knowledge about clinical trials. Those who had previously participated in clinical trials were more confident in their knowledge (χ2= 6.77, p = 0.009) and answered more knowledge questions (t = −3.90 p = 0.000). Endorsed barriers and enablers to participation included 39 factors across 12 of 14 domains relevant to behaviour change. Our approach identifies barriers that might be meaningfully addressed by careful knowledge provision (‘If I would learn more about my condition’; ‘If I find the trial documents hard to understand’), those that may require other theory-informed approaches to address (‘my feelings about the quality of my drug plan’; ‘my worry over unknown side effects’), and those that may require tailored approaches depending on participant differences such as previous experience in trials (‘If there were patient-friendly decision-making tools to help you make your participation decision’). Discussion: This work demonstrates that a comprehensive, theory-guided survey of barriers and enablers to participation in breast cancer clinical trials is feasible, can lead to detailed knowledge about the issues related to participation in specific trials, and most importantly, can lead to insights about evidence-based ways to better support patient participation.

Patients' and Health Care Professionals' Perceptions of the Potential of Using the Digital Diabetes Questionnaire to Prepare for Diabetes Care Meetings: Qualitative Focus Group Interview Study.

BackgroundIn effective diabetes management, it is important that providers and health care systems prioritize the delivery of patient-centered care and that they are respectful of and responsive to individual patient preferences and barriers.ObjectiveThe objective of the study was to conduct focus group interviews to capture patients’ and health care professionals’ perceptions and attitudes regarding digital technology and to explore how the digital Diabetes Questionnaire can be used to support patient participation in diabetes care, as a basis for an implementation study.MethodsA qualitative study was conducted with six focus group discussions with diabetes specialist nurses and medical doctors (n=29) and four focus group discussions with individuals with diabetes (n=23). A semistructured focus group interview guide was developed, including probing questions. The data were transcribed verbatim, and qualitative content analysis was performed using an inductive approach.ResultsTwo main categories were revealed by the qualitative analysis: perceptions of digital technology and the digital questionnaire in diabetes management and care and perceptions of participation in diabetes care. An overarching theme that emerged from the focus group interviews was patients’ and professionals’ involvement in diabetes care using digital tools.ConclusionsThe analysis identified important factors to consider when introducing the digital Diabetes Questionnaire in clinical use. Both professionals and patients need support and training in the practical implementation of the digital questionnaire, as well as the opportunity to provide feedback on the questionnaire answers.

Patient participation in gastrointestinal endoscopy - From patients' perspectives.

BackgroundPatient participation is associated with satisfaction and improved health‐related outcomes. In gastrointestinal endoscopy, patient participation is an underexplored area.ObjectiveTo gain understanding on patients' experiences, attitudes and preferences concerning patient participation in the endoscopy pathway.MethodsSemi‐structured interviews with endoscopy patients (n = 17, female n = 8, male n = 9, ages 19‐80 years) were performed. Interview transcripts were analysed using qualitative content analysis. Participants were recruited by purposive sampling from an endoscopy unit in a Swedish university hospital. Inclusion:≥ 18 years, fluency in Swedish and recent experience of endoscopy at the unit.ResultsFive generic categories emerged, two within the area of the patient's role, which was described as active or passive/included or excluded. Another three generic categories related to factors, critical to active participation, including organizational aspects, impressions of staff and individual circumstances were identified. In this context, patient participation described in the interviews was on a low to basic level, although sometimes reaching a higher level when staff ‘invited’ patients in decision making.DiscussionThis study contributes to the understanding of patient participation in endoscopy. Patients are in an inferior position and need support from the staff for an active role in their care. Although there were variations on the perceived importance of different factors, a heavy responsibility lies on the endoscopy staff to acknowledge the patients' individual needs and to facilitate patient participation.ConclusionsEndoscopy staff has a key role in supporting patient participation. In endoscopy settings, patient participation is vulnerable to multiple factors.

"You've got to keep moving, keep going": Understanding older patients' experiences and perceptions of delirium and nonpharmacological delirium prevention strategies in the acute hospital setting.

To explore older inpatients' experiences and perceptions of delirium and nonpharmacological delirium prevention strategies (NDPS). Delirium is a distressing and serious complication in hospitalised older adults. NDPS (supporting nutrition, mobility and cognitive participation) have strong supporting evidence. Few studies have explored older inpatients' perspectives of these strategies. This information may assist staff to better support patient participation in NDPS. Qualitative study using an interpretive descriptive (ID) methodological approach to explore older patient's experience of delirium and NDPS. Structured interviews of inpatients aged over 65years across 6 medical and surgical wards explored patients' experiences and perceptions of delirium and prevention activities related to nutrition, mobility and cognition; and barriers and enablers to participation. Reporting used COREQ. Twenty-three participants were included (12 male, 11 reported delirium experience). Participants reported a range of physiological, emotional and psychological responses to delirium, hearing about delirium was different to experiencing it. Most participants were aware of the benefits of maintaining nutrition and hydration, physical activity and cognitive engagement in hospital. Barriers included poor symptom control, inflexible routines and inconsistent communication, whilst enablers included access to equipment, family involvement, staff encouragement and individual goals. These were organised into themes: outlook, feeling well enough, hospital environment, feeling informed and listened to, and support networks. A more patient-centred approach to delirium prevention requires consideration of older people's values, needs, preferences and fit within the hospital environment and routines. Feeling informed, listened to and receiving support from staff and family carers can improve older inpatients' engagement in NPDS to prevent delirium in hospital. Nurses are ideally placed to improve patient participation in NDPS through holistic assessment and care, addressing symptoms, providing clear information about delirium and delirium prevention, and facilitating family carer support and patient interactions.

An Interview Study of Professional Carers’ Experiences of Supporting Patient Participation in a Maximum Security Forensic Psychiatric Setting

Patient participation in forensic psychiatric settings seems to be complex by nature, and previous studies show that patients rate their participation as lower in this context compared to general psychiatric contexts. Studies on caregivers’ perspective could provide a clearer picture of the components and possibilities of patient participation in forensic psychiatry. The aim of the study is to describe carers’ experiences in supporting patient participation in a maximum security forensic psychiatric care setting. Twelve psychiatric caregivers were interviewed about how they support patients’ participation. The result shows that a complexity of patient participation emerges as a difficult act of balancing the paradoxical role of caring for the patient’s interests and development, while simultaneously representing and adhering to the rules and regulations of the system in which one is employed. In conclusion, it is suggested that participation is comprehended as an umbrella term and that focus is directed to conceptualising what caregivers can do in order to create positive patient-carer relationships, as well as what constitutes such a relationship.

Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis

Plain English summaryCystic fibrosis (CF) is the commonest life-limiting inherited disorder in the UK. It affects many parts of the body including the lungs and gut leading to increased infection and problems digesting food. People with CF need to undergo many treatments each day throughout their whole lives. These include tablets, inhalers and breathing exercises, which are a huge burden, taking up several hours every dayIt is therefore, really important that the treatments we give are supported by good evidence, usually gathered from clinical trials. Unfortunately, we do not have good evidence for many of the CF treatments. We recently ran an exercise known as a James Lind Alliance Priority Setting Partnership (JLA PSP) to find out which the CF community feel are the top priority research questions. People with CF and those who look after them suggested questions to be answered by clinical trials. Through a series of online surveys and workshops these were then shortlisted to give a final top ten.Due to infection risk people with CF are advised not to mix, this meant we had to do things differently to the usual way JLA PSPs are carried out. We used videoconferencing to enable multiple people with CF to participate. Surveys were accessible online and promoted through social media.BackgroundThe James Lind Alliance (JLA) method is well recognised for setting research priorities. The JLA approach involves a combination of surveys and workshop interactions between patients, carers and health care professionals to identify and agree on a “top ten” list of research questions. Respiratory infection is one of the hallmarks of cystic fibrosis (CF). To avoid cross infection, patients are advised not to meet face to face, preventing us following standard JLA methodology. Here we describe adaptations made during our recent JLA Priority Setting Partnership (PSP) in CF.MethodsWe elicited and prioritised research questions, using sequential online surveys, promoted through social media. People with CF participated in steering committee meetings and the final workshop, using videoconferencing. Alterations to workshop methodology enabled participants attending in person and those joining remotely, to contribute equally. We also altered the JLA methodology to include “lone” questions, asked by only one survey respondent. We are now working with the CF community to co-produce research projects that answer these top ten.ResultsThere were 482 respondents, from 23 countries, who submitted 1080 questions. Increases in the number of responses occurred just after promotion on social media. Use of videoconferencing enabled participation of multiple people with CF and ensured participation from anywhere in the world, including hospital inpatients. Inclusion of lone questions resulted in one being included in our top ten.ConclusionsThere is no “one-size-fits-all” for patient involvement methodologies. Through altering the JLA methods to fit our patient group we achieved wide participation. We believe that methods used in our project may also be applied to future partnerships to increase participation, especially where people may be hospitalised or be unable to travel. The methodology we are developing through the JLA PSP CF2 project may be useful for other PSPs to follow.

Patient activation intervention to facilitate participation in recovery after total knee replacement (MIME): a cluster randomised cross-over trial

BackgroundPatient participation in care is a fundamental element of safe and high-quality healthcare with the potential to enhance health outcomes and improve patient satisfaction.ObjectivesTo test the efficacy of a clinician-facilitated,...

Patients' participation during treatment and care of breast cancer - a possibility and an imperative.

To explore how patients experience participation during treatment and care for breast cancer related to their understanding. Semi-structured individual interviews with 16 women diagnosed with breast cancer. Interpretative qualitative content analysis was performed. Three main themes describe patient participation. Theme 1 Respectful and personal encounters illustrates how the treatment from health care staff contributed to feelings of being "seen" as a human, a basis for participation. Theme 2 Part-owner in decision making describes the women's varied wishes of participating in treatment decisions. Theme 3 Striving to manage treatment, care and self-care concerns the need to manage self-care for well-being. Patient participation is both a possibility and an imperative. Patients must be recognized as unique human beings with varying needs of participation. Shared learning and understanding in dialogue with health care staff is a prerequisite. A novel approach where patients and health care staff are both partners and participants is presented. The results call for an initiation of training programs supporting pedagogical competence in staff and patients' learning in breast cancer care. Access to health care in the outpatient and the hospital settings is needed long term after treatment to support patient participation.

"Why Do They Need to Check Me?" Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study.

BackgroundRoles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients.ObjectiveThis qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians’ constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement.MethodsA total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed.ResultsTwo important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient’s role, lack of skills (technical or regarding medical jargon), motives to read, and patients’ characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care.ConclusionsLiterature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of “power” in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of “monitoring the doctor” but to make sense of the situation.

Patient participation during and after a self-management programme in primary healthcare – The experience of patients with chronic obstructive pulmonary disease or chronic heart failure

ObjectivePatient participation is facilitated by patients’ ability to take responsibility for and engage in health issues. Yet, there is limited research as to the promotion of these aspects of patient participation in long-term healthcare interactions. This paper describes patient participation as experienced by patients with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF); the aim was to describe if and how a self-management programme in primary healthcare influenced patient participation. MethodsPatients who had participated in a self-management programme were interviewed in nine focus groups (36 patients). Data was analysed using qualitative content analysis. ResultsPatients described equality in personal interactions, opportunities to share and discuss, and a willingness to share and learn to facilitate patient participation in a self-management programme. Consequently, patient participation was promoted by a match between the individuals’ personal traits and the context. ConclusionFeatures facilitating patient participation by means of sharing and assimilating knowledge and insights should be included in self-management programmes and in the care for patients with COPD and CHF. Practice implicationsA self-management programme can complement regular primary care regarding enhanced understanding of one’s disease and support patient participation and the patient’s own resources in self-management.

MS 10.03 Community Outreach - Engaging in Primary Care

Lung cancer clinical trials are critical to advancing our understanding of disease characteristics, diagnostic criteria and treatment options. With evolving molecular testing and immunotherapies, clinical trials are increasingly complex and challenging to conduct at the site level. This report highlights the role of the Lung Cancer Clinical Research Nurse (LC-CRN) as vital to supporting patient participation and physician involvement for lung cancer trials. We also review new challenges with immunotherapies, nuances of sending tissue for molecular testing and importance of managing patient and family expectations.