Patients as Partners: A Qualitative Study of Patients’ Engagement in Their Health Care (original) (raw)
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Patient Experience Journal
This essay reviews the role of paradigms in molding the thoughts of a scientific field and looks rigorously at what two key terms mean-empowered and engaged-and how their interaction points to a new way forward, requiring a reexamination of our "paradigm of patient." Five years ago, the Institute of Medicine's Best Care at Lower Cost declared that patient-clinician partnerships are a cornerstone of a learning health system, a declaration that's foundational to the era of involvement. How can we engineer that era correctly if our conception of "patient" is out of date? And how can we validate whether our model works? In the past eight years, the author has spoken at or participated in over 500 events in sixteen countries, and although declaring himself "just a patient," he has observed persistent cultural patterns that make one thing clear: there is a need to change our understanding of the role of the patient in achieving best possible care.
BMC Health Services Research
Background: Although patient engagement is internationally recognized as a core quality indicator of healthcare systems, no report has yet explored patient engagement in Saudi Arabia. Thus, we explored patients' experiences of engagement with healthcare services and assessed physicians' and nurses' perceptions of this engagement. Methods: We performed a cross-sectional study on patients and their family members admitted to either the rehabilitation or neurology department of King Fahad Medical City, Riyadh, Saudi Arabia. We also studied physicians and nurses involved in direct patient care in these departments. Two self-administered questionnaires were used to collect data on patients' experiences of engagement with healthcare services and physicians' and nurses' perceptions of that engagement. Results: We recruited 36 patients and 46 family members, as well as 64 nurses and 36 physicians. About 73% of patients and family members felt that doctors and nurses engaged them in decision making regarding care plans; 80% felt that they were a partners in the treatment plans. Over one-third of physicians and nurses believed that patient engagement improved healthcare outcomes, and about 7% believed that patient engagement was unimportant or not extremely important. Responses of physicians and nurses differed significantly from those of patients and family members with regards to the extent of the patient-physician/nurse relationship, the perception of involvement, and the degree of partnership and shared leadership. Conclusion: We assessed patient experiences of engagement with health care service and physicians' and nurses' perceptions of that engagement. Most patients/family members reported good engagement. Although most physicians and nurses believed that patient engagement improved the healthcare outcomes, some believed that improving healthcare outcomes through patient engagement was not important or not extremely important.
Patients’ perspectives on engaging in their healthcare while hospitalised
Journal of Clinical Nursing, 2018
States. Inductive thematic analysis was used to uncover the themes from the interview transcriptions. The reporting of research findings followed the COREQ checklist. Results Seventeen patients, eight male and nine female, aged between 19-83 years old were interviewed. Patients had a difficult time articulating how they participated in their care while hospitalised, with the majority stating there were few decisions to be made. Many patients felt that decisions were made prior to or during hospitalisation for them. Patients described their engagement through the following themes: sharing the subjective, involvement of family, information-gathering, constraints, "I let them take care of me," and variability. Conclusions Engagement is a dual responsibility of both nurses and patients. Patients' experiences highlight that engagement preferences and experiences are not universal between patients, speaking to the importance of assessing patient preferences for engagement in health care upon hospital admission. Relevance to clinical practice The articulation of what patients actually experience in the hospital setting contributes to improve nursing practice by offering insight into what is important to the patient and how best to engage with them in their care. The constraints that patients reported facing related to their healthcare engagement should be used to inform the delivery of future engagement interventions in the acute care setting. What does this paper contribute to the wider global clinical community? • While patient engagement has become an important component of contemporary, consumer-oriented health care, patients experience constraints to their engagement while hospitalised. • Nurses should be educated about the importance of establishing partnerships with patients and strategies they can use to engage patients in processes of decision-making, goal-setting, treatment planning and self-care through a model of shared accountability. • Patient preferences for engagement should be assessed upon hospital admission and throughout the patient's stay, so that engagement strategies can be tailored to individual patient needs.
Attitudes toward patient expertise in chronic illness
International Journal of Nursing Studies, 2000
Although it has become an accepted standard to acknowledge the patient as a full partner in health care decisions, replacing traditional authoritative relationships with those based on an emancipatory model, the experiences of persons living with chronic illness con®rm that this paradigm shift is not yet apparent in many health care relationships. In this paper, the authors present a qualitative secondary analysis of combined data sets from their research into chronic illness experience with two quite dierent chronic diseases Ð Type I Diabetes (a socially legitimized chronic disease) and Environmental Sensitivities (a disease which is currently treated with considerable scepticism). Comparing the experiences of individuals with diseases that are quite dierently socially constructed, it becomes possible to detect common underlying health professional values and attitudes that powerfully in¯uence the experience of living with and negotiating health care for a chronic illness. In the discussion of ®ndings from this study, the authors examine the implications of the spiral of behaviors that fuels mutual alienation in chronic illness care relationships if professionals are unable to value patient expertise.
Patients and Health Care Teams Forging Effective Partnerships
NAM Perspectives
1 interactions with health professionals and providing feedback that strengthens the relationship and their mutual understanding of the patient's needs and how they may best be addressed. Strong primary care, the care setting focused on in this paper, is critical to achieving better patient outcomes, especially as the prevalence of multiple chronic health conditions increases (AHRQ, 2014a). More than 75 percent of U.S. health care spending is devoted to treating persons with chronic conditions (CDC, 2009). Of course, specialists and subspecialists also play very important roles. The complexity of care and services often required today requires health professionals across the system to work with people in a coordinated, collaborative way and to consider the whole person-not just the condition or array of conditions that a person might have (Bodenheimer et al., 2002). All patients bring unique expertise regarding their preferences, skills, knowledge, and experiences into a potential relationship with a health care team. Patients-and, often, their families and caregivers-live with their conditions and symptoms 24 hours a day, 7 days a week. Patients are experts in knowing how they feel from moment to moment and day to day. However, not all patients are well informed about their medical conditions and how best to manage them (Fagerlin et al., 2010). Relatively few come to medical encounters with the same technical skills, clinical knowledge, and detailed understanding of the health care system that most clinicians have. Some patients prefer to be involved at a more detailed level, others less so (Alston et al., 2012). But many patients and family members have acquired, and many more are capable of developing, considerable knowledge, skills, and confidence in decision making that could influence their outcomes positively-especially those outcomes that matter most to them. Only recently, with increased attention on patient-centered care at the practice level, has it become evident that a large percentage of patients who have personal physicians and, especially minorities, do not have an effective health care team (Beal et al., 2007). When people have a personal physician and an effective practice team, their outcomes are better (Beal et al., 2007; Havyer et al., 2014). There is still much to learn about the practical realities of patients becoming true partners in their care, and the most effective teachers will be patients themselves. When patients and clinicians have an effective partnership, the relationship becomes more fluid. It transcends the traditional roles of learner and teacher, leader and follower. Valid, ongoing assessments of team functioning and performance, including assessments by patients themselves, will be important to identify and illuminate team functioning and the strength of the partnership with patients, and to inform improvement efforts so that demonstrably better patient outcomes can be achieved consistently. Methods Given the scope of the project, an early decision of the authors was to divide our work into three informal activity streams, each with a specific focus-literature review, patients' insights, and clinicians' and organizational insights. In the course of the work, discussions have been conducted through the IOM Best Practices Innovation Collaborative meetings, May 2013 and March 2014, which have provided helpful guidance and suggestions to us that were incorporated into writing this paper.
Patients’ quest for recognition and continuity in health care: time for a new research agenda?
Scandinavian Journal of Caring Sciences, 2019
User involvement is important in democratization of healthcare and is assumed to contribute to better and more relevant research. Despite increased requirements for user involvement in research, more studies are still needed. This study aimed at exploring what research agenda people with varied health problems consider as important, based on their own experience. The study had a phenomenological approach with a qualitative design. The sample consisted of 23 informants; nine had been critically ill and 14 were suffering from chronic muscle pain. Data were collected in five focus group interviews and one individual interview. A phenomenological approach was used in analyzing the data. Written consent was obtained from all the participants, and ethical considerations were taken throughout the entire research process. Despite various experiences among the participants, a quest to be taken 2 seriously over time by healthcare professionals emerged as a strong meaning structure in both groups. Based on these experiences, continuity across lifetime changes turned out to be an important research topic for future research. User involvement should be appreciated in all parts of the research process. A crucial prerequisite is that the users get the opportunity to bring their own experiences into the process.