Empowering stories : a topic, a method, a theory.

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

Abstract 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

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

BackgroundIn 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). ObjectiveThis 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). MethodsUsing 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. ResultsInterviews 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. ConclusionsThis 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

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

Abstract 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

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

Abstract 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

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

<div><p>Introduction</p><p>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.</p><p>Methods</p><p>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.</p><p>Results</p><p>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 <i>family shock and disorientation</i> with families needing the <i>presence and support of a provider</i>. Participants described five important elements of daily care: <i>honoring the patient’s voice</i>, <i>the need to know</i>, <i>decision-making</i>, <i>medical care</i>, and <i>culture in ICU</i>. The post-ICU experience was characterized by the challenges of the <i>transition from ICU to a hospital ward</i> and <i>long-term effects of critical illness</i>. These “ICU journey” experiences were described as integral to <i>appropriate interactions with the care team</i> and <i>comfort and trust in the ICU</i>, which were perceived as essential for a <i>community of caring</i>. Participants provided suggestions for improvement: 1) <i>provide a dedicated family navigator</i>, 2) <i>increase provider awareness of the fragility of family trust</i>, 3) <i>improve provider communication skills</i>, 4) <i>improve the transition from ICU to hospital ward</i>, and 5) <i>inform patients about the long-term effects of critical illness</i>. Analyses by independent qualitative researchers identified similar themes.</p><p>Conclusions</p><p>Patient and family member-led research is feasible and can identify opportunities for improving care.</p></div

Patient and family comfort and trust in the ICU.

<p>Patient and family member interactions with the care team determine comfort and trust in the ICU.</p