Mechanisms by which end-of-life communication influences palliative-oriented care in nursing homes: A scoping review

ObjectiveEnd-of-life communication has been largely recognized to promote quality end-of-life care in nursing home (NHs) by increasing residents’ likelihood of receiving comfort-oriented care. This scoping review summarizes what is known about the potential mechanisms by which end-of-life communication may contribute to palliative-oriented care in NHs.MethodsUsing the framework proposed by Arksey and O’Malley and refined by the Joanna Briggs Institute methodology, five literature databases were searched. We extracted 2159 articles, 11 of which met the inclusion criteria: seven quantitative, three qualitative, and one mixed-methods study.ResultsThree mechanisms were identified: a) promotion of family carers’ understanding about their family member’s health condition, prognosis, and treatments available; b) fostering of shared decision-making between health care professionals (HCPs) and residents/family carers; and c) using and improving knowledge about residents’ preferences.ConclusionFamily carers’ understanding, shared decision-making, and knowledge of residents’ preferences contribute to palliative-oriented care in NHs.Practice implicationsDiscussions about end-of-life should take place early in a resident’s disease trajectory to allow time for family carers to understand the condition and participate in subsequent, mindful, shared decision-making. HCPs should conduct systematic and thorough discussions about end-of-life treatment options with all cognitively competent residents to promote informed advance directives.     

Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions

ObjectivesSystematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation.MethodsElectronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised.ResultsSearches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent’s desired level of involvement.ConclusionThe highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making.Practice ImplicationsComplex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant.     

Persuasive communication in medical decision-making during consultations with patients with limited health literacy in hospital-based palliative care

ObjectiveBoth patients in the palliative phase of their disease and patients with limited health literacy (LHL) have an increased risk of being influenced by healthcare providers (HCPs) when making decisions. This study aims to explore to what extent persuasive communication occurs during shared decision-making (SDM) by (1) providing an overview of persuasive communication behaviours relevant for medical decision-making and (2) exemplifying these using real-life outpatient consultations.MethodsAn exploratory qualitative design was applied: (1) brief literature review; (2) analysis of verbatim extracts from outpatient consultations and stimulated recall sessions with HCPs; and (3) stakeholder meetings.Results24 different persuasive communication behaviours were identified, which can be divided in seven categories: biased presentation of information, authoritative framing, probability framing, illusion of decisional control, normative framing, making assumptions and using emotions or feelings.ConclusionsPersuasive communication is multi-faceted in outpatient consultations. Although undesirable, it may prove useful in specific situations making it necessary to study the phenomenon more in depth and deepen our understanding of its mechanisms and impact.Practice implicationsAwareness among HCPs about the use of persuasive communication needs to be created through training and education. Also, HCPs need help in providing balanced information.     

Communicating about HPV in the context of head and neck cancer: A systematic review of quantitative studies

ObjectiveRising incidence of HPV-positive head and neck cancers (HPV-HNC) means HPVinfection is increasingly relevant to patient-provider consultations. We performed a systematic review to examine, in the context of patient-provider HNC consultations: discussions about HPV, attitudes towards discussing HPV and information needs.MethodsWe searched Embase, PsychINFO, and CINAHL + for studies to August 2018. Eligible studies included: HNC healthcare professionals (HCPs) and/or HNC patients investigated HNC patient-provider communication about HPV.ResultsTen studies were identified: six including HCPs and four including HNC patients. HCPs varied in confidence in HPV discussions, which was related to their HPV knowledge. Both HCPs and patients acknowledged the need for reliable HPV information. Factors which facilitated HPV discussions included accessible HPV information for patients and HCPs and good HPV knowledge among HCPs. Barriers included the perception, among HCPs, that HPV was a challenging topic to discuss with patients.ConclusionsInformation deficits, communication challenges and barriers to discussing HPV were identified in HNC patient-provider consultations.Practice implicationsAppropriate HPV information is needed for HCPs and patients. Professional development initiatives which increase HCPs’ HPV knowledge and build their communication skills would be valuable.     

Development and evaluation of a generic education program for chronic diseases in childhood

ObjectiveTo support families with a chronically ill child, a modular curriculum and new healthcare structures (trainer education, quality management) for a group self-management program (ModuS) were developed. ModuS focuses on common psychosocial aspects of chronic conditions and comprises generic and disease-specific modules. A pilot test was conducted for asthma by comparing ModuS with an established asthma-specific education program (CAE).MethodsUnder routine care conditions, 491 children (6–17 years) with asthma and their parents participated in a multi-center prospective study (265 ModuS; 226 CAE). Families’ program satisfaction, disease-specific knowledge, health-related quality of life (HRQoL), life satisfaction, and burden of disease were assessed before, directly following and six weeks after participation.ResultsThe families were highly satisfied with the program. CAE and ModuS were associated with improved disease-specific knowledge, childreńs HRQoL and life satisfaction and decreased the families’ burden. This demonstrates comparability of existing care with the modular approach.ConclusionThe ModuS approach offers a structure for effective patient education programs aiming to improve self-management. As it focused on the similarities of chronic conditions, it provides the opportunity to establish education programs for a wide range of chronic childhood diseases.Practice implicationsModuS facilitates the development of new patient education programs.     

Incorporating shared decision making into communication with older adults with cancer and their caregivers: Development and evaluation of a geriatric shared decision-making communication skills training module

ObjectiveThe purpose of this study was to evaluate a Communication Skills Training (CST) module for health care providers (HCPs) applying a shared decision-making approach to a meeting with an older adult with cancer and his/her family.MethodsNinety-nine HCPs from community-based centers, cancer centers, and hospitals in the Northeastern U.S. who worked primarily with older adult patients participated in a CST module entitled Geriatric Shared Decision Making. Participants completed pre- and post-training Standardized Patient Assessments (SPAs) and a survey on their confidence in and intent to utilize skills taught.ResultsResults indicated high HCP satisfaction with the module, with over 95 % of participants reporting high endorsement to all five evaluation items. HCPs’ self-efficacy in utilizing communication skills related to geriatric shared decision making significantly increased pre- to post-training. In standardized patient assessments among a subset of providers (n = 30), HCPs demonstrated improvements in three shared decision-making skills: declare agenda, invite agenda, and check preference.ConclusionA geriatric shared decision-making CST workshop for HCPs showed feasibility, acceptability, and improvement in self-efficacy as well as skill uptake.Practice implicationsThis Geriatric Shared Decision-Making CST module provides an intervention for improving provider-patient-family member communication in the context of cancer care for older adults.     

Barriers and facilitators to discussing HPV with head and neck cancer patients: A qualitative study using the theoretical domains framework

ObjectiveThe incidence of human papillomavirus-associated head and neck cancers (HPV-HNC) is increasing worldwide. Research in other clinical contexts has shown that healthcare professionals (HCPs) can find discussing HPV with patients challenging. However, limited research has been conducted in HNC. This study aimed to investigate barriers and facilitators to, discussing HPV among HCPs caring for patients with HNC in Ireland.MethodsSemi-structured telephone/face-to-face interviews were conducted with HCPs. Barriers and facilitators to discussing HPV with patients were identified using the Theoretical Domains Framework (TDF).Results20 HCPs (8 clinicians, 3 nurses, 9 allied healthcare professionals) were interviewed. Barriers to discussing HPV included professionals' lack of HPV knowledge, difficulties in talking about sexual issues with patients and lack of privacy to discuss HPV in busy clinic settings. Facilitators included increasing public and patient awareness of the link between HPV and HNC and professional education and skills development.ConclusionsThis is the first theoretically informed study to identify barriers and facilitators to discussing HPV with HNC patients. HCPs consider HPV discussions to be an essential part of HNC patient care.Practice implicationsUnderstanding the issues associated with patient-provider HPV communication will help develop effective interventions to support HCPs in their HPV discussions.     

Communicating with older adults with long-term conditions about self-management goals: A systematic review and thematic synthesis

ObjectiveTo synthesise a body of fine-grained observational research on communication between healthcare professionals (HCPs), older adults, and carers regarding self-management goals and actions.MethodsWe conducted a systematic review, searching nine electronic databases and the grey literature. Two reviewers independently selected for inclusion following a two-stage process and studies and discrepancies were resolved through consultation with the review team.Results898 records were retrieved, and eight studies were included in the review. Aggregative thematic analysis resulted in 13 categories of communication practices across three decision-making domains: (1) initiating: actions occurring prior to the commitment point; (2) proposing: putting forward a course of action; and (3) committing and closing: committing (or not) to the course of action.ConclusionsDespite an increasing emphasis on the importance of personalised care planning and shared decision-making (SDM) to support older people’s health and wellbeing, HCPs did not consistently practice this approach and, in some cases, worked in opposition to it.Practice implicationsWe encourage HCPs to prepare older adults to engage actively with SDM and the goal setting process by employing patient-centred communication resources. These could assist with identifying different types of goals that are realistic and relevant to patients in daily life.     

Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review

Objective

We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials.

A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: Perspectives of patients and health care professionals

ObjectivesLimited health literacy (LHL) is associated with faster kidney deterioration. Health care professionals (HCPs) promote self-management to maintain kidney function, which is difficult for patients with LHL. Evidence lacks on perceived barriers and best strategies to optimize their self-management. Our study aims to explore experiences with and barriers for self-management from the perspectives of LHL patients and HCPs to identify strategies to optimize self-management.MethodsWe performed a longitudinal qualitative study with semi-structured in-depth interviews and focus group discussions among CKD patients and LHL (n = 24) and HCPs (n = 37) from general practices and hospitals.ResultsFour themes arose among patients: (1) CKD elusiveness, (2) suboptimal intake of knowledge (3) not taking a front-seat role, and (4) maintaining change. Among HCPs, three themes emerged: (1) not recognizing HL problems, (2) lacking effective strategies, and (3) health care barriers.ConclusionWe suggest three routes to optimize self-management: providing earlier information, applying person-centered strategies to maintain changes, and improving competencies of HCPs.Practice implicationsHCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioral approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.     

Definitions and use of the teach-back method in healthcare consultations with patients: A systematic review and thematic synthesis

ObjectiveTo review and synthesise definitions of the teach-back method in the literature. The second aim is to synthesise the barriers, facilitators and perceptions of teach-back use in healthcare consultations with patients.MethodsA systematic review and thematic synthesis following Braun and Clarke’s method.ResultsThe primary search found 1429 citations and the secondary search added 221 citations. Screening identified 66 citations eligible for data extraction. We contrasted and synthesised operational definitions of the teach-back method. The synthesis generated seven themes related to healthcare provider (HCP) and patient perceptions of teach-back (effectiveness, stigma and time-related perceptions), the universal application of teach-back, patient health outcomes and healthcare provider training.DiscussionOperational definitions of the teach-back method varied in the literature and contained implied steps. HCPs and patient perceptions of teach-back operated as both enablers and barriers to its use. HCPs training programs for the teach-back method were identified as beneficial for altering HCPs perceptions about the method and increased its use with patients.Practice implicationsStandardising operational definitions of the teach-back method can support replicability of research and enhance HCPs communication skills training programs. HCPs training on teach-back use can support the increased use of the technique with broader patient populations.     

Families’ and health care professionals’ attitudes towards Li-Fraumeni syndrome testing in children: A systematic review

Li-Fraumeni syndrome (LFS) is a highly penetrant cancer predisposition syndrome caused by germline TP53 mutations. Genetic testing is not routinely offered in asymptomatic children at risk of the condition as the benefits are debatable and the attitudes of families and health care professionals (HCPs) may vary. This review assessed the attitudes of families and HCPs towards offering genetic testing to children for LFS, with a focus on perceived advantages and disadvantages and involvement of children in the decision-making process. We searched three key databases (Medline, PsycINFO and EMBASE) to identify quantitative and qualitative studies. We screened 729 articles identifying eight studies for detailed review. Most parents perceived TP53 genetic testing to be beneficial in childhood, despite previous lack of surveillance guidelines. Parents raised some concerns, including decreased insurability and diminishing the child's autonomy. Most children tested reported no negative emotional concerns after testing, even if tested positive. Despite generally positive interest clinicians remain hesitant. Most families saw the value in involving children in decision-making. Families' acceptance of TP53 testing in childhood was high. This review highlights the need for research on the long-term psychosocial impacts of testing and the attitudes of families to be reflected in professional guidelines.     

Engaging patients and families in communication across transitions of care: An integrative review

ObjectiveTo determine the current evidence about patient and family engagement in communication with health professionals during transitions of care to, within and from acute care settings.MethodsAn integrative review using seven international databases was conducted for 2003–2017. Forty eligible studies were analysed and synthesised using framework synthesis.ResultsFour themes: 1) Partnering in care: patients and families should be partners in decision-making and care; 2) Augmenting communication during transitions: intrinsic and extrinsic factors supported transition communication between patients, families and health professionals; 3) Impeding information exchange: the difficulties faced by patients and families taking an active role in transition; and 4) Outcomes of communication during transitions: reported experiences for patients, families and health professionals.ConclusionWhile attitudes towards engaging patients and family in transition communication in acute settings are generally positive, current practices are variable. Structural supports for practice are not always present.Practice implicationsOrganisational strategies to improve communication must incorporate an understanding of patient needs. A structured approach which considers timing, privacy, location and appropriateness for patients and families is needed. Communication training is required for patients, families and health professionals. Health professionals must respect a patient’s right to be informed by regularly communicating.     

Developing a National Registry for conditions identifiable through newborn screening

PurposeState newborn screening programs are rapidly expanding with the inclusion of a large number of uncommon conditions. There remains significant uncertainty about many aspects of these conditions including their natural history, variability, treatment modalities being used, genotype-phenotype correlations, developmental outcomes, effect on families, and costs of care, among others. Data on these important outcome variables are not collected systematically through state programs. Recently, the American Academy of Pediatrics and the federal Health Resources and Services Administration have promoted the development of a data collection system on the long-term outcomes of children with conditions identified through newborn screening. This article provides an overview of the justification for such a system and recommendations for a design.MethodsRecommendations were developed through a multidisciplinary collaboration of regional and national scholars supported through a Health Resources and Services Administration funded project.ResultsWe propose a registry system with data inputs from subspecialists, the Medical Home, families, and schools. Further, the proposed system would utilize emerging communication technology to provide an interactive web-based system to support families and professionals in their care of children with these complex conditions.     

Educational programs to teach shared decision making to medical trainees: A systematic review

ObjectiveShared decision-making (SDM) is a process of collaboration between patients and clinicians. An increasing number of educational programs to teach SDM have been developed. We aimed to summarize and evaluate the body of evidence assessing the outcomes of these programs.MethodsWe conducted a systematic review of studies that aimed to teach SDM to medical trainees. Reviewers worked independently and in duplicate to select studies, extract data and evaluate the risk of bias.ResultsEighteen studies were included. Most studies focused on residents/fellows (61 %) and combined a didactic component with a practical experience (50 % used a standardized patient). Overall, participants reported satisfaction with the courses. The effects on knowledge, attitudes/confidence and comfort with SDM were small; no clear improvement on SDM skills was noted. Evaluation of clinical behavior and outcomes was limited (3/18 studies). Studies had moderate risk of bias.ConclusionVery low quality evidence suggests that educational programs for teaching SDM to medical trainees are viewed as satisfactory and have a small impact on knowledge and comfort with SDM. Their impact on clinical skills, behaviors and patient outcomes is less clear.Practical implicationsIntegration of formal and systematic outcomes evaluation (effects on behavior/clinical practice) should be part of future programs.     

Impact of returning unsolicited genomic results to nongenetic health care providers in the eMERGE III Network

PurposeAs genomic sequencing becomes more common, medically actionable secondary findings will increasingly be returned to health care providers (HCPs), who will be faced with managing the resulting patient care. These findings are generally unsolicited, ie, unrelated to the sequencing indication and/or ordered by another clinician.MethodsTo understand the impact of receiving unsolicited results, we interviewed HCPs who received genomic results for patients enrolled in the Electronic Medical Records and Genomics (eMERGE) Phase III Network, which returned results on >100 actionable genes to eMERGE participants and HCPs.ResultsIn total, 16 HCPs across 3 eMERGE sites were interviewed about their experience of receiving a positive (likely pathogenic or pathogenic), negative, or variant of uncertain significance result for a patient enrolled in eMERGE Phase III and about managing their patient on the basis of the result. Although unsolicited, HCPs felt responsible for managing the patient’s resulting medical care. HCPs indicated that clinical utility depended on the actionability of results, and whereas comfort levels varied, confidence was improved by the availability of subspecialist consults. HCPs were concerned about patient anxiety, insurability, and missing an actionable result in the electronic health record.ConclusionOur findings help inform best practices for return of unsolicited genomic screening findings in the future.     

A scoping review of interventions to promote the adoption of shared decision-making (SDM) among health care professionals in clinical practice

ObjectivesTo identify and summarize evidence on interventions to promote the adoption of shared decision-making (SDM) among health care professionals (HCPs) in clinical practice.MethodsElectronic databases including: MEDLINE, EMBASE, CINAHL, PsycINFO and Cochrane library were searched to determine eligible peer-reviewed articles. Grey literature was searched for additional interventions. Eligibility screening and data extraction were independently completed. Results are presented as written evidence summaries and tables.ResultsOur search yielded 238 articles that met our inclusion criteria. Interventions mostly targeted physicians (46%), had multiple educational modalities (46%), and were administered in group settings (44%) before the clinical encounter (71%). Very few were developed based on the learning needs of targeted HCPs (24%). Many of the SDM outcome tools used for evaluation were developed for the respective study and lacked evidence of validity and reliability (30%).ConclusionWe identified a sizable number of interventions to promote the adoption of SDM, however, these interventions were heterogeneous in their assessments for effectiveness and implementation. Therefore, it is a challenge to infer which strategies and practices are best to promote SDM adoption.Practice implicationsThe need for evidence-based standards for developing SDM interventions targeting HCPs and assessing acceptability, effectiveness and implementation is suggested.     

Communication skills training for healthcare professionals in providing genetic counseling: A scoping literature review

ObjectiveGenetic counselors need advanced communication skills, particularly when discussing tests involving massively parallel sequencing. Increasingly, non-genetic healthcare professionals (HCPs) also need to provide genetic counseling. Communication skills training (CST) may equip HCPs with the required communication skills. This scoping review provides an overview of the content, approach, effectiveness and effective features of CSTs aimed at improving genetic and non-genetic HCPs’ communication skills in providing genetic counseling.MethodsFollowing the PRISMA-ScR statement, four databases were searched for articles. Two researchers independently screened titles and abstracts, and extracted data. When applicable, information on effectiveness and effective features of CST was collated.ResultsTwenty-three articles were included. Sixteen CSTs targeted non-genetic HCPs, five targeted genetic HCPs and two targeted both. Most CSTs addressed multiple communication behaviors and consisted of role play. CSTs were found to be effective for improving HCPs (mainly self-reported) attitudes and skills. Limited evidence on specific effective features of CST was found.ConclusionsThere is a clear need for evidence on the effectiveness of CST on improving both HCPs’ communication skills in the context of genetic counseling, and patient outcomes, and its specific effective features.Practice implicationsClinical practice could benefit from evidence-based CST for genetic and non-genetic HCPs.