Understanding Immediate Concerns at Type 2 Diabetes Diagnosis: A Qualitative Comparison of Perspectives From Newly Diagnosed Adults and Clinicians
This study explored the immediate concerns of people at the time of type 2 diabetes diagnosis by comparing perspectives from 18 adults with a recent diagnosis and eight clinicians. Four key themes emerged: 1) concerns about diabetes and its management, 2) communication challenges at diagnosis, 3) inconsistent identification of concerns, and 4) discrepancies between clinicians’ actions and patients’ satisfaction. The findings highlight the need for improved communication, longer consultations, and personalized support during diagnosis to enhance patient satisfaction and engagement in care.
- Research Article
21
- 10.1371/journal.pone.0214636
- Mar 28, 2019
- PLoS ONE
Research on patient engagement in health care shows that better health outcomes and lower healthcare costs are observed among highly engaged patients. Similar to other illnesses, high levels of patient engagement in HIV care are considered essential to maintaining optimal health, and patients who are on treatment and retained in HIV care are known to have better health outcomes. In this article, we draw on focus group discussion data with patients living with HIV in order to explain tacit expectations associated with engagement in care. The main objective of our research was to elicit an explanatory model of engagement in HIV care from the patients’ perspective. We conducted focus group discussions with a sample of two distinct types of patients: those who regularly attended medical appointments and those who did not. In total, we conducted six focus group discussions (n = 43) across in three cities in the US; these included two focus group discussions with a well-engaged and less-well-engaged group in each location. Both types of patients assigned a moral dimension to engagement in care, in that well-engaged patients were considered to be ‘good’ patients. Aspiring to become a ‘good’ patient provided a meaningful goal for some and deepened vulnerabilities among patients that struggled to achieve this status. More vulnerable patients may feel less secure in health care interactions and these feelings may be amplified if patients have an unreasonable impression of what constitutes a ‘good’ patient; thereby leading to disengagement in care. Our findings can inform the development of patient-centered, tailored messages to better serve patients struggling to stay engaged in HIV care.
- News Article
49
- 10.1016/j.outlook.2012.11.003
- Jan 1, 2013
- Nursing Outlook
Action brief: Patient engagement and activation: A health reform imperative and improvement opportunity for nursing
- Research Article
5
- 10.1186/s12882-021-02264-7
- Feb 16, 2021
- BMC Nephrology
BackgroundWhile catheters are often thought the result of emergency hemodialysis (HD) initiation among patients with little or no pre-dialysis nephrology care, the role of patient level of engagement in care and modality decision-making have not been fully explored.MethodsThis is a retrospective medical record review of adults (age 18–89 years) who received care in academically affiliated private practice, public hospital, or Veterans Administration settings prior to initiating HD with a catheter between 10/1/2011 and 9/30/2012. Primary predictors were level of patient engagement in nephrology care within 6 months of HD initiation and timing of modality decision-making. Primary outcomes were provider action (referral) and any patient action (evaluation by a vascular surgeon, vein mapping or vascular surgery) toward [arteriovenous fistula or graft, (AVF/AVG)] creation.ResultsAmong 92 incident HD patients, 66% (n = 61) initiated HD via catheter, of whom 34% (n = 21) had ideal engagement in care but 42% (n = 25) had no documented decision. Providers referred 48% (n = 29) of patients for AVF/AVG, of whom 72% (n = 21) took any action. Ideal engagement in care predicted provider action (adjusted OR 13.7 [95% CI 1.08, 175.1], p = 0.04), but no level of engagement in care predicted patient action (p > 0.3). Compared to patients with no documented decision, those with documented decisions within 3, 3–12, or more than 12 months before initiating dialysis were more likely to have provider action toward AVF/AVG (adjusted OR [95% CI]: 9.0 [1.4,55.6], p = 0.2, 37.6 [3.3423.4] p = 0.003, and 4.8 [0.8, 30.6], p = 0.1, respectively); and patient action (adjusted OR [95% CI]: 18.7 [2.3, 149.0], p = 0.006, 20.4 [2.6, 160.0], p = 0.004, and 6.2 [0.9, 44.0], p = 0.07, respectively).ConclusionsTiming of patient modality decision-making, but not level of engagement in pre-dialysis nephrology care, was predictive of patient and provider action toward AVF/AVG Interventions addressing patients’ psychological preparation for dialysis are needed.
- Research Article
11
- 10.1370/afm.2569
- Sep 1, 2020
- The Annals of Family Medicine
Patient engagement has been broadly defined as the process of actively involving and supporting patients in health care and treatment decision making. The aim of this study was to identify organizational factors that are associated with greater use of patient engagement care practices in Veterans Health Administration primary care clinics. We conducted a cross-sectional analysis of data from the 2016 Patient-Aligned Care Team (PACT) national survey of direct care clinicians (primary care clinicians, registered nurses, and clinical associates). Exploratory factor analysis was used to group conceptually related patient engagement survey items into 3 subscales: planning and goal setting; motivational interviewing; and organizational strategies to promote self-management. Our independent variables included literature-based factors reported to promote team-based care and interdisciplinary collaboration in primary care. We used generalized estimating equations with multivariate logistic regression analysis to identify independent correlates of high performance on each patient engagement domain (top 25th vs bottom 25th percentile). A total of 2,478 direct care clinicians from 609 clinics completed all patient engagement items in the PACT survey. For all patient engagement sub-scales, respondents at high-performing clinics were more likely to report having regular team meetings to discuss performance improvement and having leadership responsible for implementing PACT. For 2 of 3 patient engagement subscales, high performance was also associated with having fully staffed PACT teams (≥3 team members per primary care clinician) and role clarity. Several desirable organizational and contextual factors were associated with high performance of patient engagement care practices. Strategies to improve the organizational functioning of primary care teams may enhance patient engagement in care.
- Research Article
25
- 10.1080/09540121.2014.963020
- Oct 8, 2014
- AIDS Care
Consistent individual effort in engagement in HIV medical services has been associated with positive health outcomes in people living with HIV (PLHIV). However, whether these benefits are facilitated by improved medication adherence has not been widely studied. This study aimed to investigate the marginal effect of engagement in HIV care on medication adherence at a public health facility in Kenya. Between February and April 2013, 392 patients on HIV care at Nyeri Provincial General Hospital participated in this study. Data were collected using a self-administered health survey questionnaire assessing health and sociodemographic statuses. A manual stepwise general linear model was specified to measure the effect of engagement in HIV and other associated predictors on medication adherence. Engagement in HIV care was significantly associated with log-transformed medication adherence in the sample (100·β = 9.2%, 95% CI 3.2–15.1) irrespective of gender and other selected predictors. Longer duration on antiretroviral therapy was also a significant predictor of better medication adherence (100·β = 3.2%, 95% CI 2.3–4.1). Despite inter-gender differences in adherence and engagement determinants, gender's independent effect on medication adherence and engagement in care were not statistically significant. Poor medication adherence was associated with lower patient engagement in HIV care services, suggesting that interventions which remove obstacles to regular observance of scheduled clinic appointments and eventual retention may have a beneficial impact on medication adherence and, accordingly, health outcomes in PLHIV.
- Research Article
24
- 10.1007/s13187-015-0848-6
- May 7, 2015
- Journal of Cancer Education
We examined healthcare providers' perceptions of the goals of survivorship care and survivor programs, systems-level barriers and individual patient-level barriers to engaging patients in survivorship care, and potential resources for increasing engagement. In 2012, we recruited 21 healthcare providers of young adult survivors of childhood cancers from a children's hospital and a cancer center in the Southeastern USA to complete telephone-based semi-structured interviews. The sample was 45.95 years old (SD = 7.57) on average, 52.4 % female, and 81.0 % MDs. The major goals of survivorship programs identified were medical care management (e.g., addressing late and long-term effects, providing survivorship care plans (SCPs), assisting in transition of care) and holistic care including addressing psychosocial issues and promoting healthy lifestyles. Systems-level barriers to engagement in survivorship care included limited resources (e.g., time), role confusion (e.g., within cancer centers, from treatment team to survivorship care, role of primary care providers), communication challenges within the medical system (e.g., limited tracking of patients, lack of understanding of the role of survivorship clinic), communication challenges with patients (e.g., setting expectations regarding transition to survivorship care), and lack of insurance coverage. Perceived patient-level factors included psychological barriers (e.g., fear, avoidance), resistance to survivorship care, and physical barriers (e.g., distance from survivorship clinics). Resources to address these barriers included increased access to information, technology-based resources, and ensuring valuable services. There are several systems-level and patient-level barriers to survivorship care, thus requiring multilevel interventions to promote engagement in care among young adult survivors of childhood cancer.
- Research Article
8
- 10.1007/s10461-018-2320-1
- Oct 30, 2018
- AIDS and Behavior
Despite the issuance of evidence-based and evidence-informed guidelines to improve engagement in HIV care and adherence-related outcomes, few studies have assessed contemporary adherence or engagement support practices of HIV care providers in US clinics. As a result, the standard of HIV care in the US and globally remains poorly understood. This programmatic assessment approach aimed to identify the strengths and gaps in the current standard of HIV care from the perspective of HIV care providers. A self-administered Standard of Care measure was developed and delivered through Qualtrics to HIV care providers at four different HIV care sites as a part of a multisite intervention study to improve engagement in HIV care and ART adherence. Providers were asked to provide demographic and clinic specific information, identify practices/strategies applied during typical initial visits with HIV-positive patients and visits prior to and at ART initiation, as well as their perceptions of patient behaviors and adequacy of HIV care services at their clinics. Of the 75 surveys which were completed, the majority of respondents were physicians, and on average, providers have worked in HIV care for 13.5years. Across the sites, 91% of the providers' patient panels consist of HIV-positive patients, the majority of whom are virally suppressed and 1/5 are considered "out of care." Few resources were routinely available to providers by other staff related to monitoring patient adherence and engagement in care. During typical initial visits with HIV positive patients, the majority of providers report discussing topics focused on behavioral/life contexts such as sexual partnerships, sexual orientation, disclosure, and other sources of social support. Nearly all providers emphasize the importance of adherence to treatment recommendations and nearly 90% discuss outcomes of good adherence and managing common side effects during ART start visits. Overall, providers do not report often implementing practices to improve retention in care. Survey results point to opportunities to enhance engagement in HIV care and improve ART adherence through systematic data monitoring and increased collaboration across providers and other clinic staff, specifically when identifying patients defined as "in need" or "out of care." Trial Registration: Clinicaltrials.gov NCT01900236.
- Supplementary Content
40
- 10.1111/hex.13344
- Aug 16, 2021
- Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
BackgroundPatient engagement in care is a priority and a key component of clinical practice. Different approaches to care have been introduced to foster patient engagement. There is a lack of a recent review on tools for assessing the main concepts and dimensions related to patient engagement in care.ObjectiveOur scoping review sought to map and summarize recently validated tools for assessing various concepts and dimensions of patient engagement in care.Search StrategyA scoping review of recent peer‐reviewed articles describing tools that assess preferences in and experience with patient engagement in care was conducted in four databases (Ovid Medline, Ovid EMBASE, Cochrane Database of Systematic Reviews, CINAHL‐EBSCO). We adopted a broad definition based on the main concepts of patient engagement in care: patient‐centredness, empowerment, shared decision‐making and partnership in care.Main ResultsOf 2161 articles found, 16, each describing a different tool, were included and analysed. Shared decision‐making and patient‐centredness are the two main concepts evaluated, often simultaneously in most of the tools. Only four scales measure patient‐centredness, empowerment and shared decision‐making at the same time, but no tool measures the core dimensions of partnership in care. Most of the tools did not include patients in their development or validation or just consulted them during the validation phase.Discussion and ConclusionThere is no tool coconstructed with patients from development to validation, which can be used to assess the main concepts and dimensions of patient engagement in care at the same time.Patient and Public ContributionThis manuscript was prepared with a patient expert who is one of the authors. Vincent Dumez, who is a patient expert and codirector of the Center of Excellence on Partnership with Patients and the Public, has contributed to the preparation of the manuscript.
- Research Article
10
- 10.1097/mlr.0000000000001274
- Jan 7, 2020
- Medical care
In the United States, 42% of adults, and 81% of adults over 65 years of age live with multiple chronic condition (MCC). Current interventions to facilitate engagement in care focus primarily on the patient; however, many individuals with MCC manage and live with their conditions within the context of their family. This review sought to identify interventions used to facilitate patient and/or family engagement among adults with MCC. We adhered as closely as possible to PRISMA guidelines and conducted a systematic scoping review using a modified approach by Arksey and O'Malley. We searched PubMed, Web of Science, and Scopus using terms related to MCC, patient and family engagement, and intervention. We included articles that: (1) were published in English; (2) were peer-reviewed; (3) described an engagement intervention (with or without a comparator); and (4) targeted individuals with MCC. We abstracted data from included articles and classified them using the Multidimensional Framework for Patient and Family Engagement in Health and Health Care, and the Classification Model of Patient Engagement. We identified 21 discrete interventions. Six (29%) were classified as having the highest degree of engagement. Eighteen (85%) focused on engagement at the direct care level. Only one was specifically designed to engage families. Many engagement interventions currently exist for adults with MCC. Few of these interventions foster the highest degree of engagement; most focus on engagement at the level of direct care and do not specifically target family member involvement.
- Research Article
1
- 10.1111/nuf.12210
- May 30, 2017
- Nursing forum
To report an analysis of the concept of patient engagement in prenatal care. Engagement in health care has been widely discussed but vaguely defined. Patients benefit more from their health care when they are fully engaged in their care. Patient engagement in prenatal care is an important element of prenatal care utilization that has not been analyzed, standardized as a concept, or measured. Concept analysis. CINAHL, MEDLINE, PsycINFO databases, and the internet were searched for literature published in English with a focus on peer-reviewed journals from disciplines of business, allied health sciences, health administration, psychology, and nursing, focusing on the period of 2010-2015. Hybrid version of the Walker and Avant concept analysis method (2011). This concept analysis provides 4 defining attributes of patient engagement in prenatal care and a table of related empirical referents of engagement. These elements offer a foundation for further nursing scholarship toward measurement and evaluation of patient engagement in prenatal care. Patient engagement in prenatal care represents a human response to a health condition. Efforts to increase patient engagement in health care are best addressed by the nursing profession through continued research and intervention development.
- Research Article
61
- 10.1001/jamanetworkopen.2024.43059
- Nov 5, 2024
- JAMA Network Open
Occupational burnout syndrome is characterized by emotional exhaustion, depersonalization, and a diminished sense of personal accomplishment and is prevalent among nurses. Although previous meta-analyses have explored the correlates of nurse burnout, none have estimated their association with health care quality and safety and patient morbidity and mortality. To evaluate the magnitude and moderators of the association between nurse burnout and patient safety, patient satisfaction, and quality of care. The Web of Science, Scopus, MEDLINE, Embase, PsycINFO, CINAHL, and ProQuest databases were searched from January 1, 1994, to February 29, 2024. Two reviewers independently identified studies that reported a quantifiable association between nurse burnout and any of the outcomes of patient safety, patient satisfaction, or quality of health care. The PRISMA 2020 guideline was followed. Two reviewers independently extracted the standardized mean difference (SMD) (Cohen d) estimates for a random-effects meta-analysis. Subgroup analyses and meta-regressions were conducted using prespecified variables. Any measure of patient safety, patient satisfaction, or quality of health care previously associated with nurse burnout. A total of 85 studies (81 cross-sectional and 4 longitudinal) involving 288 581 nurses from 32 countries (mean [SD] age, 33.9 (2.1) years; 82.7% female; mean [SD] burnout prevalence rate with study-specific ascertainments, 30.7% [9.7%]) were included. Nurse burnout was associated with a lower safety climate or culture (SMD, -0.68; 95% CI, -0.83 to -0.54), lower safety grade (SMD, -0.53; 95% CI, -0.72 to -0.34), and more frequent nosocomial infections (SMD, -0.20; 95% CI, -0.36 to -0.04), patient falls (SMD, -0.12; 95% CI, -0.22 to -0.03), medication errors (SMD, -0.30; 95% CI, -0.48 to -0.11), adverse events or patient safety incidents (SMD, -0.42; 95% CI, -0.76 to -0.07), and missed care or care left undone (SMD, -0.58; 95% CI, -0.91 to -0.26) but not with the frequency of pressure ulcers. Nurse burnout was also associated with lower patient satisfaction ratings (SMD, -0.51; 95% CI, -0.86 to -0.17) but not with the frequencies of patient complaints or patient abuse. Finally, nurse burnout was associated with lower nurse-assessed quality of care (SMD, -0.44; 95% CI, -0.57 to -0.30) but not with standardized mortality rate. The associations were consistent across nurses' age, sex, work experience, and geography and persistent over time. For patient safety outcomes, the association was smaller for the low personal accomplishment subcomponent of burnout than for emotional exhaustion or depersonalization, as well as for nurses with a college education. In this systematic review and meta-analysis, nurse burnout was found to be associated with lower health care quality and safety and lower patient satisfaction. This association was consistent across nurse and study characteristics.
- Research Article
- 10.1177/08445621251385620
- Oct 15, 2025
- The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres
BackgroundA growing body of evidence supports the benefits of family engagement in patient care in intensive care units (ICUs). The English version of the FAMily Engagement (FAME) tool has been validated to measure ICU family engagement. This study aimed to validate the French-Canadian version of FAME.MethodsParticipant-level data from two prospective observational validation studies of the FAME tool, involving family members of patients from eight Canadian ICUs between May 2022 and July 2024, were included. Family members completed FAME in English or French-Canadian. Following discharge, family members completed questionnaires measuring care satisfaction and mental health (anxiety and depression). Reliability was assessed by internal consistency, and convergent and predictive validity by correlation between FAME and related outcome measures. A comparison of French and English scores was also conducted.ResultsA total of 104 family members completed the French-Canadian FAME questionnaire (age 57.0 ± 15.2 years; 62% women; 8% non-White; 53% spouse/partner). This version demonstrated internal consistency (Cronbach's alpha = 0.84) and convergent and predictive validity. FAME was associated with care satisfaction, but not anxiety or depression scores. There were no significant differences in overall FAME, care satisfaction, or anxiety and depression scores between the French and English cohorts (p > 0.05).ConclusionThe French-Canadian version of the FAME tool demonstrated reliability and convergent and predictive validity in French-Canadian speakers, supporting the inclusion of French-speaking family members in future studies utilizing the FAME tool to measure family involvement in ICU patient care.This study includes data from Measuring Family Engagement in Care (The FAME Study), ClinicalTrials.gov (NCT05659485): https://clinicaltrials.gov/study/NCT05659485.
- Research Article
- 10.15344/2394-4978/2020/319
- Jan 1, 2020
- International Journal of Nursing & Clinical Practices
Introduction: The prevalence of Type 2 diabetes mellitus (T2DM) is gradually increasing throughout the globe. An estimated 415 million adults worldwide have diabetes. It is estimated that another 318 million adults suffer from impaired glucose tolerance. By the year 2040, these numbers are expected to increase to 642 million and 482 million respectively. The disease is reaching pandemic proportions and represents a significant burden on the world population. The use of lifestyle modification counseling has been shown to statistical significant among patient with T2DM, however, diabetes still a major problem in develop and under develop country. The project aimed to increase patient engagement in care of T2DM in one community mental health center (CMHC). Participants included a convenience sample of mental health patients attending the CMHC. The theoretical framework for the project was the trans-theoretical model of quality improvement. Methods: This project utilized a descriptive survey design. A total of 73 patients participated in both the preand post-interventions. The average age was 59.36 (SD = 8.739) years old with the youngest participant being 40 years old and the most senior participant being 78 years old for an age range of 38 years. As seen in Table 1, the participants were mostly female (n = 52, 71.2%), Hispanic (n = 59, 80.8%) and were diagnosed with depression (n = 39, 53. 4%).Participating patients completed the Patient Activation Measure 13 (PAM13) at pre- and post- intervention intervals to assess individual attitudes and confidence related to the selfmanagement of their care. Analysis included chart audits to assess the effectiveness of the intervention and to address the feasibility of implementing a lifestyle modification counseling program. Results: Patients demonstrated significantly increased engagement in their care at the end of the twelve-week implementation period. The PAM13 survey results remained consistent, and patients felt confident in their ability to effectively continue engagement in their care. Patient engagement in T2DM care improved after lifestyle modification counseling. The potential to improve health care outcomes is evident when providers increase communication with patients. Such interventions may ultimately lead to lower overall health care costs. Conclusions: The results demonstrated that an increase in post-implementation lifestyle modification counseling helps patient engagement. The intervention was statistically significant and demonstrated that the introduction of a lifestyle modification counseling increased patient engagement.
- Research Article
- 10.3389/frhs.2025.1640311
- Sep 12, 2025
- Frontiers in Health Services
IntroductionPregnant and postpartum people with substance use disorders (SUD) experience high rates of morbidity and mortality, especially postpartum. For this vulnerable group, lack of access to a phone contributes to poor engagement in perinatal care. This paper describes initial work evaluating the implementation of a free smartphone program for rural pregnant patients with SUD and its effectiveness for improving participation in care.MethodsThis retrospective type I hybrid-effectiveness cohort study evaluated program effectiveness, acceptability, and feasibility of implementation in obstetric practice. Semi-structured interviews with patients, providers and obstetric staff (n = 8) explored implementation success. Data on phone utilization, engagement in care and outcomes were abstracted from electronic health records and compared among three cohorts (Cohort 1: patients with SUD who received phones; Cohort 2: patients with SUD not receiving phones; Cohort 3: Patients without SUD). Kruskal–Wallis and chi-squared/Fisher's Exact tests were utilized for comparisons.ResultsProviders, staff, and patients universally found the smartphone access program useful, perceiving that it improved patient engagement in digital and in-clinic care. From 2021 to 2024, 44 patients with SUD participated in the smartphone program for an average of 162 days. Cohort 1 entered prenatal care later, attended fewer prenatal visits, and were more likely to have psychiatric comorbidity than Cohorts 2 and 3. After receiving a smartphone, there were no differences in postpartum visits between cohorts, and higher rates of behavioral health and recovery support for Cohort 1.DiscussionIn a rural obstetric clinic, implementing a free smartphone program for perinatal patients with SUD was feasible and acceptable. Though there was no difference in prenatal care utilization, patients who received a smartphone engaged in robust postpartum care and behavioral healthcare utilization. Addressing digital disparities is an essential component of health equity.
- Research Article
1
- 10.1186/s12884-023-05520-w
- Apr 3, 2023
- BMC Pregnancy and Childbirth
BackgroundCOVID-19 and efforts to manage widespread infection may compromise HIV care engagement. The COVID-19-related factors linked to reduced HIV engagement have not been assessed among postpartum women with HIV, who are at heightened risk of attrition under non-pandemic circumstances. To mitigate the effects of the pandemic on care engagement and to prepare for future public health crises, it is critical to understand how COVID-19 has impacted (1) engagement in care and (2) factors that may act as barriers to care engagement.MethodsA quantitative assessment of COVID-19-related experiences was added to a longitudinal cohort study assessing predictors of postpartum attrition from HIV care among women in South Africa. Participants (N = 266) completed the assessment at 6, 12, 18, or 24 months postpartum between June and November of 2020. Those who endorsed one or more challenge related to engagement in care (making or keeping HIV care appointments, procuring HIV medications, procuring contraception, and/or accessing immunization services for infants; n = 55) were invited to complete a brief qualitative interview, which explored the specific factors driving these challenges, as well as other impacts of COVID-19 on care engagement. Within this subset, 53 participants completed an interview; qualitative data were analyzed via rapid analysis.ResultsParticipants described key challenges that reduced their engagement in HIV care and identified four other domains of COVID-19-related impacts: physical health, mental health, relationship with a partner or with the father of the baby, and motherhood/caring for the new baby. Within these domains, specific themes and subthemes emerged, with some positive impacts of COVID-19 also reported (e.g., increased quality time, improved communication with partner, HIV disclosure). Coping strategies for COVID-19-related challenges (e.g., acceptance, spirituality, distraction) were also discussed.ConclusionsAbout one in five participants reported challenges accessing HIV care, medications, or services, and they faced complex, multilayered barriers to remaining engaged. Physical health, mental health, relationships with partners, and ability to care for their infant were also affected. Given the dynamic nature of the pandemic and general uncertainty about its course, ongoing assessment of pandemic-related challenges among postpartum women is needed to avoid HIV care disruptions and to support wellbeing.
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