Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives

ObjectiveAdolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer.Methods65 AYAs (ages 12–21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA’s transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups.Results42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition.ConclusionsAll AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare.Practice implicationsEmphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.     

“Hopes and wishes”: Goals of high-need,high-cost older patients and their caregivers

ObjectiveIntegration of patient-identified goals is a critical element of shared decision-making and patient-provider communication. There is limited information on the goals of patients with multiple medical conditions and high healthcare utilization. We aimed to identify and categorize the goals described by “high-need, high-cost” (HNHC) older patients and their caregivers.MethodsUsing conventional content analysis, we used data from interviews conducted with 17 HNHC older patients (mean age 72.5 years) and 4 caregivers.ResultsHNHC older patients and their caregivers used language such as “hopes, wishes, and wants” to describe their goals, which fell into eight categories: alleviating discomfort, having autonomy and control, decreasing treatment burden, maintaining physical functioning and engagement, leaving a legacy, extending life, having satisfying and effective relationships, and experiencing security.ConclusionOur results contribute to knowledge of goals of HNHC patients and provides guidance for improving the patient-provider relationship and communication between HNHC older patients and their healthcare providers.Practice implicationsOur findings can inform provider efforts to assess patient goals and engage high-need, high-cost older patients in shared decision-making. Further, this study contributes to an improved understanding of HNHC older patients to support continued development of effective care models for this population.     

Development of a conceptual framework to improve sexual wellbeing communication in routine prostate cancer care

ObjectiveTo systematically develop a framework to improve sexual wellbeing communication in routine prostate cancer care.MethodsThe Theoretical Domains Framework was used to guide a multi-phase process used to identify components of the framework based on evidence reviews, semi-structured interviews and stakeholder workshops. ‘Think-aloud’ testing was used to explore usability, potential barriers and other factors relevant to implementation.ResultsA conceptual communication framework consisting of ‘Engagement’ (E), ‘Assessment’ (A), information and ‘Support’ (S) and ‘Sign-posting’ (Si) sections was developed. The framework emphasises routine engagement to normalise sexual concerns, brief, non-sensitive assessment, personalised advice based on treatment type and relationship status, and a mechanism for referral to additional support or self-management resources in the form of a patient and partner handout. Usability testing identified strategies to promote implementation.ConclusionsThe proposed framework is appropriate for use in routine practice and appears to be acceptable to patients, partners and healthcare professionals. Its use may help address gaps in sexual wellbeing support for men and partners living with prostate cancer. Further work will be conducted evaluating an online engagement tool, modelled on the framework.Practice ImplicationsThe EASSi framework can facilitate and structure sexual wellbeing conversations and ensure fundamental but individualised support is provided routinely in prostate cancer care.     

How does patient engagement work in a real-world setting? Recommendations,caveats, and challenges from a psychosocial perspective

ObjectiveTo propose a possible taxonomy for diverse stakeholders outside the healthcare communication field and to promote meaningful patient engagement in healthcare settings. Moreover, to support them in making more coherent policy, strategy, and practice decisions to enhance patient participation in their healthcare systems.DiscussionThis paper is part of the pEACH Position Papers Series and provides a critical and experience-based reflection on patient engagement in different healthcare-related settings. We propose a framework that operationalises actionable patient engagement at the micro-meso-macro levels. Finally, the authors will highlight some “points of attention” that need to be addressed to support patient engagement implementation in healthcare organisations.Conclusion and practice implicationsUnderstanding and systematising the established meanings of patient engagement through a psychosocial lens is critical to addressing the following questions: "how can various health care organisations ensure that authentic patient engagement informs decision-making and strategies", "how can these organisations build authentic connections with their patients", and importantly, "how can patients gain valuable and reliable insights through patient engagement"? Answering these questions can enable key stakeholders to make informed decisions that ensure the quality and effectiveness of patient engagement initiatives in different healthcare settings.     

Shared decision-making among non-physician healthcare professionals: Enhancing patient involvement in women’s reproductive health in community healthcare settings

ObjectiveShared decision-making (SDM) is an important approach to patient-centered care in women’s reproductive healthcare. This study explored SDM experiences and perceptions among non-physician healthcare professionals.MethodsWe completed 20 key-informant interviews with non-physician healthcare professionals (i.e., NP, RN, CNM, doula, pharmacist, chiropractor) living in Indiana (September 2019-May 2020) who provided community-based women’s reproductive healthcare. Interviews were audio-recorded, transcribed, and analyzed using an expanded grounded theory framework. Constant comparative analysis identified emergent themes.ResultsProfessionals noted community-based healthcare required contextualized decision-making approaches. Results identified listening, decisional ownership, and engagement strategies that enhanced SDM involvement. Findings suggested outcome-oriented SDM concepts, including decisional ownership and investigative listening to enhance SDM. Providers redefined ‘challenging’ patients as engaged in their healthcare and discussed ways SDM improved healthcare experience beyond one visit.ConclusionFindings offered insight into actionable and practical strategies for enhancing SDM in community-based women’s reproductive healthcare. The findings offer strategies to improve SDM by addressing barriers and facilitators among professionals. This extends SDM beyond the patient-physician dyad and supports broader application of SDM.Practice implicationsIncorporating professionals’ experiences into SDM concepts can enhance SDM in community-based women’s healthcare practice, offering opportunities to support a culture of SDM across settings.     

Engaging patients and consumers in research evidence: Applying the conceptual model of patient and family engagement

ObjectiveThis essay discusses applying the Conceptual Framework for Patient and Family Engagement to partnerships with patients and consumers to increase their use of research evidence in healthcare decisions. The framework’s foundational principles hold that engagement occurs on a continuum across all levels of healthcare—from direct care to policymaking—with patients and healthcare professionals working in full partnership and sharing responsibility for achieving a safe, high-quality, efficient, and patient-centered healthcare system.DiscussionResearch evidence can serve as a critical decision-making tool in partnerships between patients and health professionals. However, as the framework suggests, without patient and consumer engagement in the design, planning, interpretation, and dissemination of research findings, it is unlikely that the broader consumer population will find research evidence useful, much less use it, to guide their healthcare decisions. Understanding what factors influence patient and consumer engagement can lead to effective strategies that enable meaningful partnerships between patients and researchers.ConclusionUnderstanding patient and consumer perspectives of research evidence is critical to engaging them in meaningful partnerships that produce actionable research findings that they can in turn use in partnership with health professionals to improve their own health and the healthcare system as a whole.     

Involving patients in undergraduate health professions education: What’s in it for them?

ObjectivesPatients have become more involved in research, policy, and health professions education. They are involved in teaching students competencies required for person-centred care, but patient benefits have not received proper attention. This exploratory study identifies how patient involvement in health professions education help patients to practice self-management and shared decision-making.MethodsIndividual interviews were conducted with patients (hereafter ‘experts by experience’) (N = 11) who participated in the Patient As a Person Module, organised for students of health professions in The Netherlands. Additionally, one of their healthcare professionals (N = 10) and family members (N = 9) were interviewed. Directed content analysis was used.ResultsParticipants reported that sharing lived experiences helped experts by experience to reflect on their preferences regarding health and healthcare, accept their changed selves, and obtain a renewed sense of purpose. They reported gaining insight into the perspectives of healthcare professionals, which yielded more equal healthcare professional-patient relationships.ConclusionsSharing their lived experiences with health and health care with students could help patients in practising effective self-management and participate in shared decision-making.Practice implicationsApproaching patient involvement in health professions education from both the perspectives of students and experts by experience, as opposed to students alone, optimises its societal impact.     

Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities

ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making.     

Active involvement of young people with T1DM during outpatient hospital consultations: Opportunities and challenges in transitional care services

ObjectiveLittle is known about active involvement of young people (YP) with type 1 diabetes (T1DM) in transitional care. This study aims to gain insight into patient-provider interactions during outpatient hospital consultations.MethodsSemi-structured observations (n = 61) of outpatient consultations with YP with T1DM (15–25 years) treated in 12 hospitals in the Netherlands. The consultations concerned pediatric care (n = 23), adult care (n = 17), and joint consultations (n = 21). Thematic data analysis focused on whether professionals engaged in open, in-depth conversations; used motivational interviewing techniques; involved YP in shared decision-making; and addressed non-medical topics.ResultsApart from some good examples, the healthcare professionals generally had difficulty interacting adequately with YP. They paid little attention to the YP’s individual attitudes and priorities regarding disease management; non-medical topics remained generally underexposed. Conversations about daily life often remained shallow, as YP’s cues were not taken up. Furthermore, decisions about personal and health-related goals were often not made together.ConclusionBy adopting a more person-centered approach, professionals could empower YP to take an active role in their diabetes management.Practice implicationsUsing a structured conversation model combined with a tool to encourage YP’s agenda-setting and shared decision-making is recommended for more person-centered transitional care in T1DM.     

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.     

Teaching clinical reasoning and decision-making skills to nursing students: Design,development, and usability evaluation of a serious game

BackgroundSerious games (SGs) are a type of simulation technology that may provide nursing students with the opportunity to practice their clinical reasoning and decision-making skills in a safe and authentic environment. Despite the growing number of SGs developed for healthcare professionals, few SGs are video based or address the domain of home health care.AimsThis paper aims to describe the design, development, and usability evaluation of a video based SG for teaching clinical reasoning and decision-making skills to nursing students who care for patients with chronic obstructive pulmonary disease (COPD) in home healthcare settings.MethodsA prototype SG was developed. A unified framework of usability called TURF (Task, User, Representation, and Function) and SG theory were employed to ensure a user-centered design. The educational content was based on the clinical decision-making model, Bloom’s taxonomy, and a Bachelor of Nursing curriculum. A purposeful sample of six participants evaluated the SG prototype in a usability laboratory. Cognitive walkthrough evaluations, a questionnaire, and individual interviews were used for the usability evaluation. The data were analyzed using qualitative deductive content analysis based on the TURF framework elements and related usability heuristics.ResultsThe SG was perceived as being realistic, clinically relevant, and at an adequate level of complexity for the intended users. Usability issues regarding functionality and the user–computer interface design were identified. However, the SG was perceived as being easy to learn, and participants suggested that the SG could serve as a supplement to traditional training in laboratory and clinical settings.ConclusionsUsing video based scenarios with an authentic COPD patient and a home healthcare registered nurse as actors contributed to increased realism. Using different theoretical approaches in the SG design was considered an advantage of the design process. The SG was perceived as being useful, usable, and satisfying. The achievement of the desired functionality and the minimization of user–computer interface issues emphasize the importance of conducting a usability evaluation during the SG development process.     

Improving shared decision-making in advance care planning: Implementation of a cluster randomized staff intervention in dementia care

ObjectiveIncreasing staff engagement level of shared decision-making in advance care planning for persons with dementia in nursing homes. Perceived importance, competence and frequency of staff members applying shared decision-making were measured. Additionally, facilitators and barriers in the implementation process were described.MethodsIn this pretest-posttest cluster randomized trial, 311 staff members from 65 Belgian nursing home wards participated. Key components of the intervention were knowledge on shared decision-making, role-play exercises and internal policies on advance care planning. Audio recordings of advance care planning conversations between residents, families and staff were compared before and after the intervention. Participants filled in questionnaires and provided feedback.ResultsWards demonstrated a higher level of shared decision-making after the intervention (p < 0.001) while time spent on the conversations did not increase. This effect persisted at 6 months follow-up (p < 0.001). Participants perceived shared decision-making as more important (p = 0.031) and felt more competent (p = 0.010), though frequency of use did not change (p = 0.201). High staff turnover and difficult co-operation with GP’s were barriers.ConclusionNursing home staff benefits from this training in shared decision-making.Practice implicationsLearning shared decision-making in advance care planning for persons with dementia is possible and sustainable in the time-constricted context of nursing homes.     

Physician communication styles in initial consultations for hematological cancer

ObjectiveTo characterize practices in subspecialist physicians’ communication styles, and their potential effects on shared decision-making, in second-opinion consultations.MethodsTheme-oriented discourse analysis of 20 second-opinion consultations with subspecialist hematologist-oncologists.ResultsPhysicians frequently “broadcasted” information about the disease, treatment options, relevant research, and prognostic information in extended, often-uninterrupted monologs. Their communicative styles had one of two implications: conveying options without offering specific recommendations, or recommending one without incorporating patients’ goals and values into the decision. Some physicians, however, used techniques that encouraged patient participation.ConclusionsBroadcasting may be a suboptimal method of conveying complex treatment information in order to support shared decision-making. Interventions could teach techniques that encourage patient participation.Practice implicationsTechniques such as open-ended questions, affirmations of patients’ expressions, and pauses to check for patient understanding can mitigate the effects of broadcasting and could be used to promote shared decision-making in information-dense subspecialist consultations.     

Engagement and Affective Communication During Pediatric Nephrology Clinic Visits: Associations with Medication Adherence

ObjectiveTo evaluate whether engagement and affective communication among adolescents and young adults (AYAs) with chronic kidney disease (CKD), caregivers, and pediatric nephrology providers during outpatient clinic visits predicts antihypertensive medication adherence.MethodsAYAs (n = 60, M age = 15.4 years, SD = 2.7, 40% female, 43% African American/Black) and caregivers (n = 60, 73% female) attended audio-recorded clinic visits with pediatric nephrologists (n = 12, 75% female). Recordings were analyzed using global affect ratings of the Roter Interactional Analysis System. Antihypertensive medication adherence was monitored electronically before and after clinic visits. A linear regression model evaluated associations between affect ratings and post-visit adherence.ResultsAYAs took 84% of doses (SD = 20%) pre-visit and 82% of doses (SD = 24%) post-visit. Higher AYA engagement (β = 0.03, p = .01) and the absence of provider negative affect (β=-0.15, p = .04) were associated with higher post-visit adherence, controlling for pre-visit adherence, AYA sex, age, and race, and clustered by provider.ConclusionsPost-visit adherence was higher when AYAs were rated as more engaged and providers as less negative.Practice ImplicationsAYAs with lower engagement may benefit from further adherence assessment. Communication strategies designed to more actively engage AYAs in their care and diminish provider conveyance of negative affect during clinic visits may positively influence adherence among AYAs with CKD.     

Online usability and patients with long-term conditions: a mixed-methods approach

BackgroundTo improve the information position of health care consumers and to facilitate decision-making behavior in health the Dutch ministry of Health commissioned the National Institute for Public Health and the Environment to develop, host and manage a public national health and care portal (www.kiesbeter.nl) on the Internet. The portal is used by over 4 million visitors in 2010. Among them, an increasing amount of patients that use the portal for information and decision making on medical issues, healthy living, health care providers and other topics.ObjectiveFirst objective is to examine what usability aspects of the portal kiesBeter.nl matter for chronic patients and their informal carers with regard to information seeking, self-management, decision making, on line health information and other variables. Second objective is to make evidence-based practical recommendations for usability improvement.MethodsAn innovative combination of techniques (semi-structured interviews; eHealth Literacy scale; scenario-based study using think-aloud protocol and screen capture software; focus group) is used to study usability and on line information seeking behavior in a non random judgment sample of three groups of patients (N = 21) with long-term medical conditions (arthritis, asthma and diabetes).ResultsThe search strategy mostly used (65%) by the relatively well-educated subjects is ‘orienteering’. Users with long-term conditions and their carers expect tailored support from a national health portal, to help them navigate, search and find the detailed information they need. They encounter serious problems with these usability issues some of which are disease-specific. Patients indicate a need for personalized information. They report low impact on self-management and decision making. Overall judgment of usability is rated 7 on a Likert type 0–10 scale. Based on the outcomes recommendations could be formulated. These have led to major adaptations to improve usability.LimitationsA non-representative composition of a small non random judgment sample does not permit generalization to other populations and cognitive bias cannot be quantified. However if mixed methods are applied valid conclusions can be drawn with regard to usability issues.     

Assessment of medical students’ shared decision-making skills in simulated physician-patient encounters

ObjectiveTo compare shared decision-making skills of medical students who voluntarily translate medical documents into plain language with students who do not participate in this voluntary task.Methods29 medical students who voluntarily translated medical documents for patients into plain language on the online-platform https://washabich.de (WHI group) and 29 medical students who did not (non-WHI group) participated in a simulated virtual consultation hour. Via skype, participants communicated with six simulated patients. All conversations were transcribed and a blinded rater assessed them with the OPTION scale for shared decision-making.ResultsThe WHI group received significantly (p < .001) higher total scores for shared decision-making with the OPTION scale than the non-WHI group. The greatest differences in scores were found for the items “The clinician checks that the patient has understood the information.” (WHI: 2.98 ± 0.77 vs. non-WHI: 2.61 ± 0.89, p < .001) and “The clinician offers the patient explicit opportunities to ask questions during the decision-making process.” (WHI: 2.83 ± 1.00 vs. non-WHI: 2.40 ± 1.07, p < .001).ConclusionWritten translation of medical documents is associated with significantly better OPTION scores for shared decision-making in simulated physician-patient encounters.Practice ImplicationsTo use written medial translation exercises in general to improve medical students’ shared decision-making skills.