Contingent engagement: What we learn from patients with complex health problems and low socioeconomic status

Objective

Elicit patients’ perceptions of factors that facilitate their engagement in care

Patients’ expectations for and experiences with primary healthcare services received from a patient centered medical home

ObjectiveExpectations for and experiences with healthcare services are summarized for 1143 patients receiving care in a statewide demonstration of Patient Centered Medical Homes (PCMH).MethodsPatients were recruited from 91 primary care clinics for semi-structured interviews to determine what patients expect, what they plan to do and how they intend to execute their plans in partnership with their healthcare team.ResultsThe majority (78%) of patients defined the patient-team partnership as a collaborative and problem-solving effort. Overall, 68% defined responsibility for own health as a personal responsibility; 55% defined listening to patient’s concerns and answering questions as a responsibility of their healthcare team. Diet and exercise came up most frequently whether as a personal responsibility, issues for receiving additional help from their clinic, or plans for personal change.ConclusionPatients’ preferred a collaborative, problem-solving healthcare team partnership but also had boundaries for what additional services they wanted from this team.Practice Implications: Patients’ expectations for a collaborative partnership, acceptance of personal responsibility and interest in diet and exercise expands opportunities for patient education and teamwork. Clinics’ engagement with broader resources would be needed to address patients’ many and varied challenges to taking care of their health.     

‘That’s the doctor’s job’: Overcoming patient reluctance to be involved in medical decision making

ObjectiveTo review the barriers to patient engagement and techniques to increase patients’ engagement in their medical decision-making and care.DiscussionBarriers exist to patient involvement in their decision-making and care. Individual barriers include education, language, and culture/attitudes (e.g., deference to physicians). Contextual barriers include time (lack of) and timing (e.g., lag between test results being available and patient encounter). Clinicians should gauge patients’ interest in being involved and their level of current knowledge about their condition and options. Framing information in multiple ways and modalities can enhance understanding, which can empower patients to become more engaged. Tools such as decision aids or audio recording of conversations can help patients remember important information, a requirement for meaningful engagement. Clinicians and researchers should work to create social norms and prompts around patients asking questions and expressing their values. Telehealth and electronic platforms are promising modalities for allowing patients to ask questions on in a non-intimidating atmosphere.ConclusionResearchers and clinicians should be motivated to find ways to engage patients on the ethical imperative that many patients prefer to be more engaged in some way, shape, or form; patients have better experiences when they are engaged, and engagement improves health outcomes.     

Health-related information needs and preferences for information of individuals with cardiovascular disease from underserved populations: A systematic review

ObjectiveThis systematic review aimed to identify the information needs and preferences of individuals with CVD from underserved populations.MethodsFive databases were searched from data inception to February 2022. Pilot and case report studies, non-peer-reviewed literature, and studies published in a language other than English, Portuguese, or Spanish were excluded. Structured and thematic analysis of all included studies were performed. The Critical Appraisal Skills Program and the Downs and Black Checklist were used to assess the quality of the qualitative and quantitative studies, respectively.ResultsOf 35,698 initial records, 19 studies were included, most in observational design and classified as “fair” quality. Underserved populations – women, people living in rural areas, ethnic minority groups, older people, and those with low socioeconomic status – presented unique needs in four main groups, with some similarities across them: information about CVD, primary and secondary prevention of CVD, CVD management, and health care, policies and practices. Across the studies there was a lack of standardization on how individuals’ needs were assessed and reported.ConclusionUnderserved populations with CVD have unique information needs and preferences that should be address during their care.Practical implicationInformation from this study may assist health care professionals with the development of comprehensive strategies to improve their provision of care for specific CVD patient groups.     

Specific technological communication skills and functional health literacy have no influence on self-reported benefits from enrollment in the TeleCare North trial

PurposeThe Danish TeleCare North trial has developed a telehealth system, Telekit, which is used for self-management by patients diagnosed with chronic obstructive pulmonary disease (COPD). Self-management is the engagement in one’s own illness and health by monitoring and managing one’s symptoms and signs of illness. The study examines the association between COPD patients’ use of Telekit and their functional health literacy and the association between their use of Telekit and their specific technological communication skills.MethodsA consecutive sample of participants (n = 60) from the TeleCare North trial were recruited. Face-to-face interviews were conducted with each participant to collect demographic data. Functional health literacy was measured with the Danish TOFHLA test. Participants completed a non-standardised questionnaire about their health status, their use of the Telekit system, and their specific technological communication skills. Binary logistic regressions were performed to examine how functional health literacy and specific technological communication skills influenced the use of Telekit by giving users an enhanced sense of freedom, security, control, and a greater awareness of COPD symptoms.ResultsParticipants (27 women, 33 men) had a mean age of 70 (SD: 8.37) years. Functional health literacy levels were classified as inadequate in 14 (23%) participants, as marginal in 12 (20%), and as adequate in 34 (57%). Participants self-reported a feeling of increased security (72%), greater freedom (27%), more control (62%), and greater awareness of symptoms (50%) when using Telekit. The use of Telekit was not significantly associated with levels of functional health literacy or with the number of specific technological communication skills (p > 0.05) based on the binary logistic regressions.ConclusionThe enhanced sense of security, freedom, control, and the greater awareness of COPD symptoms achieved by using Telekit were unassociated both with the patients’ score of functional health literacy and with their specific technological communication skills. On the basis of our results it seems that the specific technological communication skills and functional health literacy are not a prerequisite for the use of the Telekit system.     

Oncologists’ experiences caring for LGBTQ patients with cancer: Qualitative analysis of items on a national survey

ObjectivesSexual and gender minority (SGM) individuals experience cancer-related health disparities and reduced quality of cancer care compared to the general population in part due to a lack of knowledgeable providers. This study explored oncologists’ experiences and perspectives in providing patient-centered care for SGM individuals with cancer.MethodsWe conducted a qualitative analysis of oncologists’ responses to four open-ended items on a national survey eliciting their experiences, reservations, and suggestions in treating SGM patients.ResultsOver 50 % of the 149 respondents of the national survey responded to at least one open-ended item. Many oncologists reported positive experiences reflecting personal growth and affirmative care practices, such as open, non-judgmental communication, compassion, competence, and supporting patients’ identity. There was a notable lack of experience with transgender patients in particular. Lack of knowledge, interpersonal communication concerns (e.g., fear of offending patients), and microaggressions (“don’t ask, don’t tell”) were identified as barriers to providing affirming care.ConclusionsOncologists recognize their knowledge deficits and need strategies to overcome communication barriers and microaggressions among the cancer care team to provide SGM-affirming care.Practice implicationsCurricula are needed to train oncologists in SGM healthcare needs and affirming communication skills to facilitate patient-centered care for SGM individuals with cancer.     

Between and within race differences in patient-centeredness and activation in mental health care

ObjectivesThe aim of this study was to compare Black and White mental health care patients’ perceptions of their providers’ and their own participation in patient-centered mental health care. Perceptions of patient-centered care (PCC) in relation to the Multidimensional Model of Racial Identity were explored.MethodsBlack and White veterans receiving mental health care (n = 82) completed surveys assessing patient activation, involvement in care, perceptions of PCC, and therapeutic alliance. Black participants (n = 40) also completed the Multidimensional Inventory of Black Identity.ResultsThere were no differences by race in perceived PCC, though Black participants had lower levels of therapeutic alliance with their mental health care provider and were less activated. Black identity centrality, private regard, and public regard were positively related to PCC and elements of PCC such as patient information seeking/sharing.ConclusionsIntragroup identity variables such as racial centrality, regard, and ideology influenced perceived PCC among Black participants. Race identity variables should be explored in future research on racial disparities and PCC.Practice implicationsMental health care providers serving Black patients should create opportunities to discuss racial identity and race-related experiences as part of their efforts to improve therapeutic alliance and increase the patient-centeredness of care.     

User preferences for and engagement with text messages to support antihypertensive medication adherence: Findings from a pilot study evaluating an emergency department-based behavioral intervention

ObjectiveWe examined users’ preferences for and engagement with text messages delivered as part of an emergency department (ED)-based intervention to improve antihypertensive medication adherence.MethodsWe recruited ED patients with elevated blood pressure for a pilot randomized trial evaluating a medication adherence intervention with text messages. Intervention participants chose text content and frequency, received texts for 45 days, and completed a feedback survey. We defined engagement via responses to texts. We examined participant characteristics associated with text preferences, engagement, and feedback.ResultsParticipants (N = 101) were 57% female and 46% non-White. Most participants (71%) chose to receive both reminder and informational texts; 94% chose reminder texts once per day and 97% chose informational texts three times per week. Median text message response rate was 56% (IQR 26–80%). Participants who were Black (p < 0.01), had lower income (p = 0.03), or had lower medication adherence (p < 0.01) rated the program as more helpful and wanted additional functionalities for adherence support.Conclusions and Practice ImplicationsWhile overall engagement was modest, participants at risk of worse health outcomes expressed more value and interest in the program. Findings inform the design of text messaging interventions for antihypertensive medication adherence and support targeting vulnerable patients to reduce health disparities.Clinical trials registrationNCT02672787     

An accessible,relational, inclusive,and actionable (ARIA) model of genetic counseling compared with usual care: Results of a randomized controlled trial

PurposeEffective approaches to communicate genomic information are needed to ensure equitable care. In a randomized controlled superiority trial, we tested a novel practice model that aims to make genetic counseling inclusive, by making the communication accessible, relational, and actionable (ARIA).MethodsIn total, 696 English- and Spanish-speaking patients aged 18 to 49 years, enriched for individuals from historically underserved backgrounds, were randomized in 1:1 ratio to ARIA or usual care. Primary outcomes were accuracy of recall, communication satisfaction, and perceived understanding. In total, 33 participants completed qualitative interviews.ResultsRecall and understanding were high for all participants. ARIA participants scored higher on the relationship scale of communication satisfaction (mean difference = 0.09, 95% CI = <0.01 to 0.17). Moderator analyses of communication satisfaction showed that those with lower health literacy reported less communication difficulty in ARIA and those using medical interpreters reported greater communication ease in ARIA. No significant difference was found on other primary and secondary outcomes. Qualitative data enhanced understanding of how and why ARIA can be effective.ConclusionThis study provides evidence that a genetic counseling intervention that focuses on specific communication skills to enhance relationship-building, patient engagement, and comprehension can be effective with all patients and may be especially valuable for patients of lower health literacy and Spanish-speakers who use a medical interpreter.     

A scoping review of communication tools applicable to patients and their primary care providers after discharge from hospital

ObjectiveTransitions from hospital to home are high-risk episodes. Communication problems between patients/carers and their primary healthcare providers are a central part of the risk. This literature review aimed to identify any existing tools or information (including secondary care instruments) that would facilitate designing new communication instruments for primary care to manage and mitigate risk at discharge.MethodFive databases (Pubmed, Embase, Cinahl, Web of Science and Cochrane) were searched using a three stem approach (primary/transitional care, discharge period, communication). A dual reviewer system was used, following PRISMA guidelines.ResultsFrom 61 full text articles a total of ten tools were found, 25 articles contained other useful content, 19 further tools were found in grey literature. Most material originated from the USA and described hospital-based transitional care interventions.ConclusionNo ready-made patient/provider communication tool for the post-discharge period in primary care was found. Future communication tools should enhance education and engagement of patients so they feel able to initiate communication.Practice implicationsCollating post-discharge communication material is of importance to improving the safety of care transitions and will enable creation of new tools specifically designed for primary care. These tools will improve patient activation (‘the knowledge, skills and confidence a person has in managing their own health and care’) with the ultimate aim of reducing error and harm in primary care through improved communication of healthcare decisions.     

Veterans’ perceptions of racial bias in VA mental healthcare and their impacts on patient engagement and patient-provider communication

ObjectivesDrawing from social identity threat theory, which posits that stigmatized groups are attuned to situational cues that signal racial bias, we examined how African-American veterans evaluate verbal and non-verbal cues in their mental health encounters. We also explored how their evaluations of perceived racial bias might influence their healthcare engagement behaviors and communication.MethodsWe interviewed 85 African-American veterans who were receiving mental health services from the US Department of Veterans Affairs (VA), examining their views and experiences of race in healthcare. We analyzed the data using a constructivist grounded theory approach.ResultsParticipants identified several identity threatening cues that include lack of racial diversity representation in healthcare settings, and perceptions of providers’ fears of Black patients. We describe how participants evaluated situational cues as identity threats, and how these cues affected their engagement behaviors and healthcare communication.ConclusionOur findings revealed situational cues within clinical encounters that create for Black veterans, fear of being negatively judged based on stereotypes that have characterized African-Americans.Practice ImplicationsWe discuss the implications of these findings and provide suggestions on how to create identity safe environments for minority patients that include delivery of person-centered care, and organizational structures that reduce providers’ burnout.     

A latent profile analysis on patient empowerment programme in a Hong Kong primary care setting

ObjectiveThis study identified the profiles of subgroups of type 2 diabetic (T2DM) patients of the Patient Empowerment Programme (PEP) by different levels of benefits gained in diabetic self-management behaviors, self-efficacy, and health literacy.MethodsThis study adopted a non-experimental repeated-measures design on T2DM patients who joined PEP, using structured questionnaires. Latent profile analysis (LPA) was used to identify patterns of participants’ change on the outcome measures.ResultsFindings of LPA revealed that participants who were older, unemployed, weaker in diabetic self-management, and having a higher self-perception in personal disease risk were more likely to join the empowerment sessions and gained more benefits from the program. Participants with lower impairment in energy function and lower autonomy in personal health care showed more improvement in the outcomes.ConclusionThe study identified significant factors associated with patients’ participation on and benefits gained from a service delivery model integrating health education and patient empowerment in a primary care setting.Practice implicationFindings from this study shed light on strategies to improve the PEP design in order to meet the needs of individuals with different health-related profiles.     

Nurses’ experiences of using an interactive tailored patient assessment tool one year past implementation

BackgroundDespite evidence of benefits, integration of patient-centered communication in clinical practice is challenging. Interactive tailored patient assessment (ITPA) tools can contribute to a more patient-centered care approach. However, little research has examined the impact of such tools on nursing care once they have been implemented.ObjectiveTo explore nurses’ experiences of the benefits of and barriers to using an ITPA called Choice, in cancer care one year after its implementation.MethodsThis investigation is a part of a larger study examining the use of Choice in cancer care. Four focus group interviews were conducted with 20 nurses experienced in using the Choice application. The data were analyzed using qualitative content analysis.ResultsThree themes and nine sub-themes emerged: (1) “Choice as facilitator for shared understanding and engagement in patients’ own care,” with three sub-themes: preparing both patient and nurse for communication, shared engagement in care planning, and giving the patients a voice; (2) “enhancing the patients’ strengths,” with two sub-themes: releasing patient's internal strengths and confirming “normalcy” for the patient; and (3) “new challenges for the nurse,” with four sub-themes: organizational challenges, interactions with technology, a need for training in communication skills, and new ethical challenges.ConclusionsFindings suggest that, from nurses’ perspectives, integration of ITPAs such as Choice in clinical practice offers many benefits that can contribute to patient-centered care. However, to reap these benefits, use of such tools must receive equal priority as other routines, and require sufficient time, space and competence. Choice also challenged nurses’ professional roles and created dilemmas such as nurses’ ambivalence regarding patients’ levels of disclosure of sensitive issues and the nurses’ ability to respond to them. Although patient-centered care is advocated as model for good clinical practice, this is not always internalized. Tools such as Choice may help to make such a shift happen.     

iBDecide: A web-based tool to promote engagement in shared decision-making among adolescents with ulcerative colitis

BackgroundAdolescents and young adults (AYAs) seek increased autonomy and self-efficacy. AYAs must learn to manage their medical care in preparation for transition to adult healthcare. Our team’s research found that AYAs need more information about their disease and treatmentObjectiveTo develop and test the usability of a decision tool “iBDecide” to promote shared decision-making among AYAs with ulcerative colitis (UC) who are beginning to manage their treatment and medicationsMethodsUsing design thinking, 14 AYAs, 6 healthcare providers, 4 designers, a social worker, and a human factors researcher developed a shared decision-making tool. The System Usability Scale (SUS) assessed usabilityResultsAYAs preferred an application with information on treatment, medication, nutrition, and symptom tracking. A web-based application, ‘iBDecide’, was developed to include these options. SUS results indicated that participants on average “agree” that: ‘they would use iBDecide’ and that ‘it was easy to use and streamlined’. The mean SUS score was 78.25 (+/?12.91), range 70–90DiscussionIncluding AYAs in tool development helps ensure usability and improves engagement in shared decision-making. Co-designed tools may remove barriers for engagement and skill-building needed for the transition to adult care.ConclusioniBDecide can stimulate AYA engagement in shared decision-making in treating UC.     

Engaging with ethnic minority consumers to improve safety in cancer services: A national stakeholder analysis

ObjectiveEthnic minority populations are often exposed to healthcare-associated harm. There is little evidence about whether current patient engagement interventions are relevant. We conducted a national analysis of existing approaches amongst stakeholders in cancer care.MethodsFive online focus groups were conducted with 24 participants from consumer and health organisations across the Australian cancer system. Case studies depicting common methods of healthcare engagement to improve patient safety were developed and used to explore the suitability of current methods. Data were analysed thematically using the framework method.ResultsThree themes were identified: 1) sociocultural foundations of consumer engagement; 2) principles for adaptation; and 3) integration and implementation into cancer services. Sociocultural beliefs about cancer were considered to influence suitability. Adaptation may include multichannel methods, visual modalities and culturally specific content. Health system capacity, cultural competence of health service providers and consumer-led co-development were identified as critical to successful implementation.ConclusionsExisting engagement strategies are not completely suitable for ethnic minority populations nor feasible for implementation within cancer services.Practice ImplicationsHealthcare services must work with ethnic minority populations to understand if and how underpinning beliefs influence engagement with cancer services. A range of tangible techniques may enhance the suitability of existing interventions.     

Care partners reading patients’ visit notes via patient portals: Characteristics and perceptions

BackgroundCare partners are key members of patients’ health care teams, yet little is known about their experiences accessing patient information via electronic portals.ObjectiveTo better understand the characteristics and perceptions of care partners who read patients’ electronic visit notes.Patient involvementFocus groups with diverse patients from a community health center provided input into survey development.MethodsWe contacted patient portal users at 3 geographically distinct sites in the US via email in 2017 for an online survey including open ended questions which we qualitatively analyzed.ResultsRespondents chose whether to answer as care partners (N = 874) or patients (N = 28,782). Among care partner respondents, 44% were spouses, 43% children/other family members, and 14% friends/neighbors/other. Both care partners and patients reported that access to electronic notes was very important for promoting positive health behaviors, but care partners’ perceptions of importance were consistently more positive than patients’ perceptions of engagement behaviors. Open-ended comments included positive benefits such as: help with remembering the plan for care, coordinating care with other doctors, decreasing stress of care giving, improving efficiency of visits, and supporting patients from a geographical distance. They also offered suggestions for improving electronic portal and note experience for care partners such as having a separate log on for care partners; having doctors avoid judgmental language in their notes; and the ability to prompt needed medical care for patients.DiscussionCare partners value electronic access to patients’ health information even more than patients. The majority of care partners were family members, whose feedback is important for improving portal design that effectively engages these care team members.Practical valuePatient care in the time of COVID-19 increasingly requires social distancing which may place additional burden on care partners supporting vulnerable patients. Access to patient notes may promote quality of care by keeping care partners informed, and care partner’s input should be used to optimize portal design and electronic access to patient information.