‘Expert advice’ for developing decision support: A qualitative study of women who have experienced periviable birth

ObjectiveTo elicit advice from women who have experienced periviable birth to optimize periviable counseling, care, and decision support.MethodsWe conducted a qualitative study among 21 women who experienced periviable deliveries within three years. Using semi-structured interviews, we asked participants what advice they would offer providers and women/families based on their own experiences. Interviews were independently coded by three trained coders.ResultsFor providers: Participants said to be ‘patient’ and appreciate the novelty of each family’s experience. They suggested being ‘realistic’ and ‘factual’; favored joint OB/Neonatology counseling; and encouraged providers to attend to maternal guilt and self-blame. For women/families: They encouraged asking questions, avoiding the internet, and finding joy in whatever time they had with their child. For hospitals: They advocated for changes to facilitate more mother/baby contact.ConclusionProviders can support parents by presenting facts, showing empathy and patience, and reassuring women that they are not to blame. This study highlights patient perspectives to improve interactions with providers, optimize women/families’ experiences, and advance efforts toward developing patient-centered systems of periviable care.Practice implicationsWomen who experience periviable birth desire counseling that is empathetic and ‘realistic’, encouragement to ask questions, and reassurance that outcomes are not their fault.     

Preliminary Testing of A Web-Based Lung Cancer Screening Decision Coaching Tool for Older Chinese American Smokers and Their Providers

ObjectivesTo examine the acceptability of a culturally targeted lung cancer screening decision aid developed for older Chinese Americans with a smoking history and primary care providers serving this patient population.MethodsStudy participants reviewed a web-based decision aid (DA) for lung cancer screening named "Lung Decisions Coaching Tool (LDC-T)." Participants completed a baseline survey and were invited to join an interview. During the interview, participants engaged with the Lung Decisions Coaching Tool and then completed standardized measures of acceptability, usability, and satisfaction.ResultsChinese American smokers (N =22) and Chinese American physicians (N=10) rated the acceptability and usability of a patient version and provider versions of the LDC-T, respectively. Patient version demonstrated high levels of acceptability, usability and satisfaction. Most participants rated the information provided as good or excellent, the amount of tool information was just right, and they thought the tool would be useful for making a screening decision. The tool was well received by participants for ease of use and well-integrated functions. Furthermore, participants indicated they would like to use the tool to help prepare for lung cancer screening shared decision-making with their provider. Similar results were found for the provider version of the LDC-T.ConclusionsLung cancer screening represents an evidence-based approach to reducing lung cancer morbidity and mortality among chronic high-frequency smokers. Study results suggest the acceptability of a culturally targeted lung cancer screening decision aid for Chinese American smokers and providers. Additional research is needed to determine the effectiveness of the DA in increasing appropriate levels of screening in this underserved population.     

Feasibility,acceptability, and effectiveness of a decision aid versus an informational website to promote clinical trial decision-making among cancer patients: A pilot randomized controlled trial

ObjectiveTo assess intervention feasibility and acceptability, and compare the effectiveness of the CHOICES Decision Aid (DA) versus the National Cancer Institute (NCI) Cancer Clinical Trials (CCT) website to improve knowledge about CCTs and preparedness to make an informed decision.MethodsOncology patients (n = 101) with a scheduled clinic visit were enrolled and randomized. Decision-making variables were collected at two timepoints. Post-intervention scores were examined via paired t-tests and multivariate regression analyses. Predictors of the magnitudes of the change in scores were examined in multivariable regression analyses.ResultsThe interventions were feasible to implement and acceptable to participants. Both interventions increased objective and subjective knowledge, improved clarity of opinions, and reduced decisional conflict (p-values < 0.01). Improvements in the belief that one could find out about CCTs were observed in the CHOICES DA arm (p < 0.001). Multivariable analyses controlling for educational attainment showed no significant differences in the magnitude of change in outcome variables between intervention arms, but did find that improvements in some variables in the NCI arm – but not CHOICES DA arm – were associated with previous educational attainment.ConclusionsInterventions were feasible to implement and acceptable. Improvements in knowledge and decision-making outcomes were observed in both arms, supporting the view that interventions to improve CCT decision making are effective and feasible. Our results suggest that the CHOICES DA may be more effective than an informational website in improving decision-making outcomes regardless of participants’ educational attainment.Practice implicationsCCT resources should support informed decision-making among all cancer survivors, regardless of educational attainment.     

Hospital chaplains’ communication with patients: Characteristics,functions and potential benefits

ObjectiveHospital chaplains communicate with patients concerning spirituality/religion, but many aspects of their interactions have received little attention.MethodsTelephone qualitative interviews of ~1 h each were conducted with chaplains and analyzed, drawing on grounded theory.ResultsWe interviewed 21 U.S. chaplains. Chaplains have relatively unique characteristics, having relatively more time to spend with patients, and less rigid and less medicalized agendas, while gaining respect/trust as religious figures. Chaplains can thus provide several critical beneficial functions – e.g., obtaining key information from patients/families that can help with decision-making and with diagnosis and treatment, and conveying medical providers’ points of view to patients/families. Consequently, chaplains can serve as mediators between patients/families and providers; and also overcome staff biases and “labelling” of patients, and pursue or encourage psychological interventions, in part because psychotherapists are often unavailable.ConclusionWhile past research suggested certain ways how chaplains might benefit hospitals, these professionals can aid these institutions and improve patient care in additional vital, tangible ways.Practical implicationsHospital administrators, chaplaincy departments, doctors, nurses and others should more fully recognize, encourage and facilitate these functions. Targeted improvements in practice and education can help achieve these goals. The findings suggest, too, several specific questions for further investigation.     

Design of a safety dashboard for patients

BackgroundNearly one third of hospitalized patients suffer harm from medical errors in U.S. hospitals each year.ObjectiveOur goal was to design a patient-facing application that is intended to engage patients and their caregivers in reviewing and responding to clinical issues that may have safety implications.Patient involvementWe conducted user-centered design sessions with recently hospitalized individuals and /or informal caregivers.MethodsWe conducted five user-centered design sessions with total of 37 individuals. Sessions began with individuals sharing personal stories of recent hospitalizations and any experienced safety events. We then solicited feedback on the current iteration of the patient-facing safety application. The design of the app was updated between sessions.ResultsThe design of our app centers around three key findings. First, involving patients in safety promotion is novel to most patients and their caregivers: therefore the framing of the tool's purpose and appropriate use is critical to engage potential users and manage expectations, this messaging was carefully crafted with patient input. Second, since most patients do not associate specific safety issues with appropriate remedial or preventative actions, the centerpiece of the application is a table that connects safety issues with related “Questions you should ask” and “Things you can do”. Third, patients need understandable explanations of medical terms and concepts as well as explanation of changes in risk; the tool includes plain language “translations” of all medical terms used, links to curated patient education materials, and simplified graphics to visualize changes in risk.DiscussionOur findings may generalize to other efforts to engage patients in their care.Practice valueDesigning for patient engagement requires patients' perspective both on their current role and their ideal role; framing for expectations, action-oriented design, and clarity of presented information may address that gap in patient engagement.     

The implementation of a decision aid for women with early-stage breast cancer considering contralateral prophylactic mastectomy: A pilot study

ObjectiveDespite little survival benefit and potential for harm, contralateral prophylactic mastectomy (CPM) rates are increasing amongst early-stage breast cancer patients at low contralateral breast cancer risk. We developed a CPM decision aid (DA) and conducted a pilot implementation.MethodsSurgeons and oncologists recruited eligible patients considering CPM. Consenting patients received the DA, completed a questionnaire and participated in a semi-structured interview. Clinicians were interviewed at study close.ResultsEleven clinicians and 31 patients participated. Three themes emerged: perceived utility and impact of the DA, disagreement regarding timing of delivery and target population, and implementation strategies. Both women and clinicians found the DA valuable, indicating it confirmed rather than changed preferences. Women (all of whom raised CPM themselves), preferred offering the DA early in treatment discussions whilst clinicians favoured targeting women who enquired about CPM.ConclusionA DA about CPM is feasible and acceptable, but questions remain about the role of DAs in these types of decisions where one option has limited medical benefit.Practice implicationsSome women have a high need to make an informed choice about CPM. Tools to support this could include a DA with a clear recommendation against CPM and an explanation why.     

Insecure family bases and adolescent drug abuse: A new approach to family patterns of attachment

Abstract

A new approach to assessing family attachment patterns is presented, using a composite measure of individual attachment representations based on the Bartholomew Attachment Interview. A cluster analysis yielded three different patterns in a sample of N = 37 families with a drug dependent adolescent (age 14 – 25) and both biological parents. A “triangulated” pattern (mothers: preoccupied; fathers: dismissing; adolescents: fearful) was found in 65% of the sample. A total of 19% showed an “insecure” pattern (mothers, fathers, and adolescents: fearful) and 16% a “near-secure” pattern (mothers and adolescents: secure; fathers preoccupied). Preliminary comparisons between these groups indicate differences in comorbid psychiatric disorders, in individual and family functioning, but not in addiction severity. There is a trend towards differences in outcome of family therapy. Implications for treatment and further research are discussed.     

A systematic review of effectiveness of decision aids to assist older patients at the end of life

ObjectiveTo describe the range of decision aids (DAs) available to enable informed choice for older patients at the end of life and assess their effectiveness or acceptability.MethodsSearch strategy covered PubMed, Scopus, Ovid MEDLINE, EMBASE, EBM Reviews, CINAHL and PsycInfo between 1995 and 2015. The quality criteria framework endorsed by the International Patient Decision Aids Standards (IPDAS) was used to assess usefulness.ResultsSeventeen DA interventions for patients, their surrogates or health professionals were included. Half the DAs were designed for self-administration and few described use of facilitators for decision-making.Treatment: options and associated harms and benefits, and patient preferences were most commonly included. Patient values, treatment goals, numeric disease-specific prognostic information and financial implications of decisions were generally not covered. DAs at the end of life are generally acceptable by users, and appear to increase knowledge and reduce decisional conflict but this effectiveness is mainly based on low-level evidence.ConclusionsContinuing evaluation of DAs in routine practice to support advance care planning is worth exploring further. In particular, this would be useful for conditions such as cancer, or situations such as major surgery where prognostic data is known, or in dementia where concordance on primary goals of care between surrogates and the treating team can be improved.Practice implicationsGiven the sensitivities of end-of-life, self-administered DAs are inappropriate in this context and genuine informed decision-making cannot happen while those gaps in the instruments remain.     

Seriously ill hospitalized patients’ perspectives on the benefits and harms of two models of hospital CPR discussions

ObjectiveTo describe seriously ill patients’ perspectives on expert-endorsed approaches for hospital cardiopulmonary resuscitation (CPR) discussions.MethodsWe created two videos depicting a hospital doctor discussing CPR with a seriously ill patient. One depicted a values-based approach with a doctor's recommendation, and one an information-focused approach without a recommendation. During semi-structured interviews, 20 seriously ill hospitalized patients viewed and commented on both videos. We conducted a thematic analysis to describe benefits and harms of specific discussion components.ResultsHalf of participants reported no preference between the videos; 35% preferred the information-focused, and 15% the values-based. Participants’ reactions to the discussion components varied. They identified both benefits and harms with components in both videos, though most felt comfortable with all components (range, 60–65%) except for the doctor's recommendation in the values-based video. Only 40% would feel comfortable receiving a recommendation, while 65% would feel comfortable with the doctor eliciting their CPR preference as in the information-focused video, p = 0.03.ConclusionParticipants’ reactions to expert-endorsed discussion components varied. Most would feel uncomfortable receiving a doctor's recommendation about CPR.Practice implicationsParticipants’ varied reactions suggest the need to tailor CPR discussions to individual patients. Many patients may find doctor's recommendations to be problematic.     

Developing an audio-based communication tool for NICU discharge of Latino families with limited English proficiency

ObjectiveResearch shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL.MethodsFocus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability.ResultsProvider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families.ConclusionOur QPL may address challenges faced by Latino parents LEP when transitioning home.Practice implicationsQPLs may improve Latino NICU infants’ healthcare outcomes.     

Motivational interviewing with families in the home environment

ObjectiveThis study explored the feasibility and acceptability of using Motivational Interviewing (MI) in the home setting with families of preschoolers.MethodsUsing mixed-methods pilot data from an MI-based obesity prevention intervention delivered via home visits by health educators (HEs) with 44 families (n = 17 four home visit group; n = 14 two home visit group), we examined: 1) fidelity of MI adherence by HEs; 2) parents’ perceptions of the intervention; and 3) HEs insights pertaining to the intervention’s delivery.ResultsMultiple measures of MI fidelity were deemed to exceed defined proficiency levels. Ninety-three percent of families reported being “satisfied” to “very satisfied” with the intervention. HEs reported building a high level of trust with families and gaining a thorough understanding of familial context. Parents appreciated how HEs’ were knowledgeable and provided personalized attention when discussing health goals. Some parents suggested more directive advice and follow-up visits as ways to improve the intervention.ConclusionHome-based MI was conducted with a high level of fidelity, was well accepted by families and practitioners.Practice implicationsOur findings from parents and MI practitioners provide key learnings that can inform future behavior change interventions that propose to use MI within the home setting.     

Adapting a peer-led self-management program for breast cancer survivors in Switzerland using a co-creative approach

ObjectiveThe peer-led Cancer Thriving and Surviving Program (CTS) has demonstrated improved health outcomes for cancer survivors. We describe a co-creative process for adapting the CTS for breast cancer survivors in Switzerland and integrating the program into the clinical pathway of Swiss breast centers.MethodsA co-creative approach was employed. Breast cancer survivors and health care professionals (total n = 81) participated in three workshops, an online rating, and a consensus conference. An iterative cycle (evidence, ideas, refining, rating, and synthesis) guided the adaptation process.ResultsSurvivors involvement in the adaptation process allowed to tailor the self-management program to the psychosocial needs identified as the highest priority. New contents “Being a woman”, “Breast cancer and my (working) life” and “My exercise” were added to the CTS. Program duration was expanded from 6 to 7 weeks. Transition to follow-up care was considered as the optimal time point for program integration into the clinical pathway.ConclusionThe co-creative process may serve as a model in adapting supportive interventions for cancer. A subsequent pilot testing examined the feasibility and preliminary efficacy.Practice implicationsCombining expertise of health care professionals and patients to co-create a peer-led breast cancer self-management program may enhance acceptability and adoption.     

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.     

Clinicians’ accounts of communication with patients in end-of-life care contexts: A systematic review

ObjectiveCommunication between patients and end-of-life care providers requires sensitivity given the context and complexity involved. This systematic review uses a narrative approach to synthesise clinicians’ understandings of communication in end-of-life care.MethodsA systematic, narrative synthesis approach was adopted given the heterogeneity across the 83 included studies. The review was registered prospectively on PROSPERO (ID: CRD42019125155). Medline was searched for all articles catalogued with the MeSH terms “palliative care,” “terminal care” or “end-of-life care,” and “communication”. Articles were assessed for quality using a modified JQI-QARI tool.ResultsThe findings highlight the centrality and complexity of communication in end-of-life care. The challenges identified by clinicians in relation to such communication include the development of skills necessary, complexity of interpersonal interactions, and ways in which organisational factors impact upon communication. Clinicians are also aware of the need to develop strategies for interdisciplinary teams to improve communication.ConclusionTraining needs for effective communication in end-of-life contexts are not currently being met.Practice ImplicationsClinicians need more training to address the lack of skills to overcome interactional difficulties. Attention is also needed to address issues in the organisational contexts in which such communication occurs.     

Development of video animations to encourage patient-driven deprescribing: A Team Alice Study

ObjectivePatient-driven deprescribing initiatives aim to increase patient knowledge and strengthen self-advocacy skills. This article describes the development of three animated videos designed to educate older adults about unsafe prescribing and medication harm, based on the actionable lessons from the death, by polypharmacy, of an older adult in our community.MethodsUsing a community based participatory research approach (CBPR), members of three senior centers (n = 53) and the Deprescribing Partnership of Western New York (n = 30) were recruited and participated in two rounds of focus groups to guide the video development.ResultsStakeholder input led to changes in content, wording, and visual presentation. The final versions of the videos emphasize the following messages (1) “New medications and what you should know about the risks”, (2) “What you should do when a doctor tells you never to take a certain medication”, (3) “What you should know about medications when you are in the hospital.”ConclusionThe study highlights the successful process of using CBPR to develop a series of videos designed to provide information on the risks of polypharmacy, and empower older adults to advocate for themselves.Practice implicationsAnimated educational videos are a novel strategy to address medication harm in older adults. This research is a critical first step to increasing patient-led discussions that reduce the incidence of medication harm and inappropriate medication use among older adults.     

“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.     

Qualitative analysis of cancer telephone consultations: Differences in the counseling needs of Japanese men and women

ObjectiveTo analyze large-scale data obtained from telephone cancer consultations and clarify sex differences in the information sought by callers to guide future cancer survivor support.MethodsWe qualitatively analyzed 10,534 cases of telephone consultations with cancer patients. The relationships between callers’ words and sex were visualized through a correspondence analysis, and the keywords extracted were visualized with a dependency relationship to the words “worry” and “anxiety,” which had a high prevalence in the text data.ResultsMost of the male callers sought consultation about stomach cancer (11.8%), the consultations were predominantly about “suspicion of having cancer” (25.2%), and males indicated that the goal was to gather accurate information. Female callers mostly sought consultation about breast cancer (18.4%) were mainly interested in learning about “treatment” (31.0%), and mostly used the keywords "worry" and "anxiety." The total number of callers without a definitive diagnosis accounted for 20% of all consultations.ConclusionsHealthcare providers need to understand unique sex-based coping styles and perform regular follow-ups. There is also a need for online platforms that provide information from the patient’s perspective.Practical implicationsProviding a cancer consultation support system and easy-to-understand medical information will improve communication between survivors, their families, and medical staff.