Parents’ needs and perceived gaps in communication with healthcare professionals in the neonatal (intensive) care unit: A qualitative interview study

ObjectiveTo explore parents’ needs and perceived gaps concerning communication with healthcare professionals during their preterm infants’ admission to the neonatal (intensive) care unit (NICU) after birth.MethodsSemi-structured, retrospective interviews with 20 parents of preterm infants (March 2020), admitted to a Dutch NICU (level 2–4) minimally one week, one to five years prior. The interview guide was developed using Epstein and Street’s Framework for Patient-Centered Communication. Online interviews were audio-taped and transcribed verbatim. Deductive and inductive thematic analysis was performed by two independent coders.ResultsCommunication needs and gaps emerged across four main functions of NICU communication: Building/maintaining relationships, exchanging information, (sharing) decision-making, and enabling parent self-management. Communication gaps included: lack of supportive physician communication, disregard of parents’ views and agreements, missing communication about decisions, and the absence of written (discharge) information.ConclusionThis study improves our understanding and conceptualization of adequate NICU communication by revealing persisting gaps in parent-provider interaction. Also, this study provides a steppingstone for further integration of parents as equal partners in neonatal care and communication.Practice implicationsThe results are relevant to practitioners in the field of neonatal and pediatric care, providing suggestions for tangible improvements in NICU care in the Netherlands and beyond.     

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.     

The association between parent-reported provider communication quality and child obesity status: Variation by parent obesity and child race/ethnicity

ObjectiveTo examine the association between healthcare provider communication quality and child obesity status, and the role of parent obesity and child race/ethnicity regarding this association.MethodsWe conducted a cross-sectional secondary data analysis with the 2011–2013 Medical Expenditures Panel Survey of parents with children ages 6–12 (n = 5390). We used multivariable logistic regression to examine the association of parent-reported healthcare provider communication quality (explaining well, listening carefully, showing respect, and spending enough time) with child obesity status, and effect modification by parent obesity and child race/ethnicity.ResultsParents of obese children were more likely to report that their child’s healthcare provider listened carefully (OR = 1.41, p = 0.002) and spent enough time (OR = 1.33, p = 0.022) than parents of non-obese children. Non-obese parents of obese children experienced better communication in the domains of listening carefully (p < 0.001) and spending enough time (p = 0.007). Parents of obese non-Hispanic Asian children and non-Hispanic Black children were more likely to report that providers explained things well (p = 0.043) and listened carefully (p = 0.012), respectively.ConclusionParents of obese children experienced better communication if parents were non-obese or children were non-Hispanic Black or Asian.Practice implicationsHealthcare providers should ensure effective communication with obese parents of obese children.     

The functions of adequate communication in the neonatal care unit: A systematic review and meta-synthesis of qualitative research

ObjectiveTo assess the main functions of parent-provider communication in the neonatal (intensive) care unit (NICU) and determine what adequate communication entails according to both parents and health professionals.MethodsA systematic review and meta-synthesis of qualitative research. PubMed, Ebsco/PsycINFO, Wiley/Cochrane Library, Ebsco/CINAHL, Clarivate Analytics/Web of Science Core Collection, and Elsevier/Scopus were searched in October-November 2019 for records on interpersonal communication between parents and providers in neonatal care. Title/abstract screening and full-text analysis were conducted by multiple, independent coders. Data from included articles were analyzed using deductive and inductive thematic analysis.Results43 records were included. Thematic analysis of data resulted in the development of the NICU Communication Framework, including four functions of communication (1. building/maintaining relationships, 2. exchanging information, 3. (sharing) decision-making, 4. enabling parent self-management) and five factors that contribute to adequate communication across these functions (topic, aims, location, route, design) and, thereby, to tailored parent-provider communication.ConclusionThe NICU Communication Framework fits with the goals of Family Integrated Care to encourage parent participation in infants’ care. This framework forms a first step towards the conceptualization of (adequate) communication in NICU settings.Practice implicationsFindings can be used to improve NICU communication in practice, in particular through the mnemonic TAILORED.     

Barriers and enablers of older adults initiating a deprescribing conversation

ObjectiveTo examine older adults’ perceptions and identify barriers and enablers to initiating a conversation about stopping medication(s) with their healthcare provider.MethodsWe conducted one focus group (n = 3) and in-depth, face-to-face, individual interviews (n = 6) using an interview guide. Older adults aged ≥65 years in a retirement community who were taking ≥5 medications were recruited. Focus groups and interviews were audio-recorded and transcribed verbatim. Both a deductive analysis, informed by the Theoretical Domains Framework, and an inductive analysis were conducted.ResultsFive themes and fourteen sub-themes were identified. Theme 1, ‘older adult-related barriers’, discusses limited or varying self-efficacy, past unsuccessful deprescribing experiences and limited familiarity with medications/deprescribing. Theme 2, ‘provider-related barriers’, discusses trust, short office visits, lack of communication and multiple providers. Theme 3, ‘environmental/social-related barriers’, involves limited availability of resources and access to telehealth/internet. The remaining themes (Themes 4–5) identified enablers including strategies to promote older adults’ self-efficacy and improved healthcare communication.ConclusionConsumer-centric tools could improve older adults’ self-efficacy to initiate deprescribing conversations.Practice ImplicationsRemoving barriers and implementing enablers may empower older adults to initiate deprescribing conversations with providers to take fewer medications. Ultimately, this could be a catalyst for increased translation of deprescribing in practice.     

Assessment of parent understanding in conferences for critically ill neonates

ObjectivesThis study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants.MethodsWe enrolled parents and clinicians participating in family conferences for infants with neurologic conditions. Family conferences were audio recorded as they occurred. We used a directed content analysis approach to identify clinician assessments of understanding and parent responses to those assessments. Assessments were classified based on an adapted framework; responses were characterized as “absent,” “yes/no,” or “elaborated.”ResultsFifty conferences involving the care of 25 infants were analyzed; these contained 374 distinct assessments of understanding. Most (n = 209/374, 56%) assessments were partial (i.e. okay?); a minority (n = 60/374, 16%) were open-ended. When clinicians asked open-ended questions, parents elaborated in their answers most of the time (n = 55/60, 92%). Approximately three-quarter of partial assessments yielded no verbal response from parents. No conferences included a teach-back.ConclusionsAlthough common, most clinician assessments of understanding were partial or close-ended and rarely resulted in elaborated responses from parents. Open-ended assessments are an effective, underutilized strategy to increase parent engagement and clinician awareness of information needs.Practice implicationsClinicians hoping to facilitate parent engagement and question-asking should rely on open-ended statements to assess understanding.     

Effects of parent-provider communication during infant hospitalization in the NICU on parents: A systematic review with meta-synthesis and narrative synthesis

ObjectiveTo synthesize and analyse the literature on the effects of parent-provider communication during infant hospitalization in the neonatal (intensive) care unit (NICU) on parent-related outcomes.MethodsSystematic review with meta-synthesis and narrative synthesis. Databases (PubMed, PsycINFO, Cochrane Library, CINAHL, Web of Science, Scopus) were searched in October/November 2019. Studies reporting, observing, or measuring parent-related effects of parent-provider communication in the NICU were included. Study quality was assessed using the Quality Assessment Tool for Studies with Diverse Designs. Qualitative studies were meta-synthesized using deductive and inductive thematic analysis. Quantitative studies were analysed using narrative synthesis.Results5586 records were identified; 77 were included, reporting on N = 6960 parents, N = 693 providers, and N = 300 NICUs. Analyses revealed five main (positive and negative) effects of parent-provider interaction on parents’ (1) coping, (2) knowledge, (3) participation, (4) parenting, and (5) satisfaction. Communication interventions appeared impactful, particularly in reducing parental stress and anxiety. Findings confirm and refine the NICU Communication Framework.ConclusionsParent-provider communication is a crucial determinant for parental well-being and satisfaction with care, during and following infant hospitalization in the NICU.R. Practice Implications: Providers should particularly consider the impact on parents of their day-to-day interaction – the most occurring form of communication of all.     

Effectiveness of question prompt lists in patients with breast cancer: A randomized controlled trial

ObjectivesTo evaluate the effectiveness of a question prompt list (QPL) in decision self-efficacy, decision-making participation, patient–physician communication, decisional conflict or regret, and health status in patients with breast cancer.MethodsA total of 240 patients with breast cancer were randomly assigned to a QPL group or control group (n = 120 each). The intervention and control groups received an additional educational QPL booklet and routine care, respectively.ResultsThe intervention group exhibited significant improvements in decision self-efficacy, perceived patient–physician interactions, and patient–physician communication compared with the control group. Multilevel modeling analyses revealed significant group–time interaction effects on decision self-efficacy (β = 9.99, P < 0.01), perceived patient–physician interactions (β = 8.10, P < 0.01), patient–physician communication (β = 5.02, P < 0.01), and anxiety status (β = ?3.78, P < 0.05). The QPL intervention exerted more favorable effects than routine care, with repeated measurements of the same patients and the data of patients under the care of the same surgeons accounted for.ConclusionsThe QPL intervention exerted multidimensional effects on decision-making outcomes among patients with breast cancer.Practical implicationsClinicians can integrate a QPL into routine care for patients with breast cancer.     

Effectiveness of an internet-based education on maternal satisfaction in NICUs

ObjectiveThis study was conducted to evaluate the effect of internet-based education on the satisfaction of the mothers of the preterm neonates in the NICUs.MethodsThis quasi-experimental study was conducted on 80 mothers of preterm neonates hospitalized in the NICUs of two hospitals in Iran during 9 months. The mothers were assigned in two groups as cases and controls. The satisfaction level of the mothers was evaluated by using WBPL-Revised¹ in both groups on the first and tenth day of the study. Mothers in the case group received the educational program available at www.iranlms.ir/myinfant for 10 days. After 10 days, the satisfaction level of the mothers in both groups was measured by questionnaire again.Resultthe satisfaction of the mothers increased in both groups after this intervention. However, comparison of the mean scores revealed that the satisfaction of the mothers in the case group increased significantly following the intervention (P < 0.001).ConclusionConsidering the benefits of internet-based education, its utilization in mothers education programs in NICUs is recommended.Practice implicationsThe results of this study show nurses in the NICU is a way to improve communication and education to parents of infants hospitalized in NICU.     

Communication regarding the deactivation of implantable cardioverter-defibrillators: A scoping review and narrative summary of current interventions

ObjectivesCommunication about deactivation of implantable cardioverter-defibrillator (ICD) therapy at end-of-life (EoL) is a recognised issue within clinical practice. The aim of this scoping review was to explore and map the current literature in this field, with a focus on papers which implemented interventional studies.MethodsSystematic searches of six major databases were conducted. Citations were included by four researchers according to selection criteria. Key demographic data and prespecified themes in relation to communication of ICD deactivation at EoL were extracted.ResultsThe search found 6197 texts of which 63 were included: 39 quantitative, 14 qualitative and 10 mixed-methods. Surveys were predominantly used to gather data (n = 34), followed by interviews (n = 18) and retrospective reviews of patient records (n = 18).ConclusionsSeveral key gaps in the literature warrant further research. These include who is responsible for initiating ICD deactivation discussions, how clinicians should initiate and conduct these discussions, when ICD deactivations should be occurring, and family perspectives. Adequately explored themes include patient and clinician knowledge and attitudes regarding ICD deactivation at EoL.Practical implicationsFacilities treating patients with ICDs at EoL should consider ongoing quality improvement projects aimed at clinician education and protocol changes to improve communication surrounding EoL ICD deactivation.     

Exploring chronic airways disease patients’ perspectives on self-management topics

ObjectivesIn this study, we explored chronic airways disease (CAD) patients' responses to health literacy (HL) communication domain questions within disease self-management scenarios, as part of a larger CAD HL measurement tool development study.MethodsAdult asthma and chronic obstructive pulmonary disease (COPD) patients from specialty care respiratory clinics were initially presented with realistic disease management scenarios and asked to share information they would communicate. Participants’ responses were grouped into response categories that were reviewed and verified by key informants. A new cohort of CAD patients then responded to the same scenarios and had their answers placed into the developed response categories by trained interviewers.Results19 initial stage participants' responses informed response categories for the following self-management topics: Inhaler Use (n = 20); Prednisone Use (n = 30); Flu (Influenza) (n = 35); and Weather Forecasting & Air Quality Index (n = 29). 141 participants’ responses were categorised during the second stage.ConclusionsSpecialty care CAD patients displayed an understanding of key information to communicate across disease self-management topic. Our two-step, patient-driven approach may interest researchers investigating health-related communication from patients' perspectives.Practice implicationsFindings may illuminate potential areas to investigate communication gaps among CAD patients; further investigation is warranted among non-specialty care patients.     

Role of parental atopy in cow's milk allergy: a population-based study

BackgroundA family history of atopy has been considered an independent risk factor for atopic diseases in children.ObjectiveTo relate the risk of an infant developing IgE-mediated cow's milk allergy (IgE-CMA) to the atopic status of parents.MethodsAssessment of the parental atopic status of children with IgE-CMA (n = 66) previously identified in a large-scale prospective study was compared with the parental atopic status of a control group of healthy infants (n = 156). The atopic status was identified both by self-reporting and skin prick tests (SPTs).ResultsAnalysis for the risk for infants to develop IgE-CMA depended on the assessment method used. No significant differences were noted in self-reported parental atopic status between the IgE-CMA patients and the control group. However, among the subgroup of infants with persistent IgE-CMA (n = 25), maternal but not paternal self-reporting for atopy was more likely compared with parents of the control group (P = .04). In contrast, when analyzed by SPT, in both this persistent subgroup and the total allergic cohort, no significant differences were noted whether analyzed by single parent or both parents and whether the parent tested singly or multiply positive on the SPT.ConclusionIn families with children with persistent IgE-CMA, self-reporting of atopy by parents may be biased. Furthermore, the demonstration of IgE-mediated responses to allergens in parents is insufficient by itself, in a general population cohort, to predict which infants are at greatest risk of developing IgE-CMA.     

Digital audio recordings improve the outcomes of patient consultations: A randomised cluster trial

ObjectivesTo investigate the effects on patients’ outcome of the consultations when provided with: a Digital Audio Recording (DAR) of the consultation and a Question Prompt List (QPL).MethodsThis is a three-armed randomised controlled cluster trial. One group of patients received standard care, while the other two groups received either the QPL in combination with a recording of their consultation or only the recording. Patients from four outpatient clinics participated: Paediatric, Orthopaedic, Internal Medicine, and Urology. The effects were evaluated by patient-administered questionnaires.ResultsA total of 4349 patients participated in the study. DAR significantly increased the probability of fulfilling the participants’ self-perceived information needs by 4.1% to 6.3%, particularly with regard to test results (OR = 1.41, 95%CI: 1.14-1.74, p = 0.001) and treatment options (OR = 1.39, 95%CI: 1.13-1.71, p = 0.002). Additionally, the interventions positively influenced the participants’ satisfaction with the treatment, their relationship with the health professional, and their experience of being involved in the decision-making.ConclusionProviding outpatients with a QPL and DAR of their consultation positively influences the patients’ perception of having adequate information after the consultation.Practice implicationsThe implementation of a QPL and audio recording of consultations should be considered in routine practice.     

What do community-dwelling older adults with chronic pain value in a program of combined pain neuroscience education plus exercise?

ObjectiveTo explore the experience of older adults after a pain neuroscience education (PNE) and exercise intervention.MethodsFocus group interviews were conducted with 14 older adults after receiving 8-weekly sessions of PNE and exercise and encompassed older adults’ perceptions of the intervention and its impact. Interviews were transcribed verbatim and analyzed by 3 researchers using thematic analysis in a five-step approach (compiling, disassembling, reassembling, interpreting, and concluding).ResultsThree themes emerged: pain reconceptualization, motivational factors, and perceived improvements. Pain reconceptualization was illustrated by participants’ ability to use language that related to PNE concepts (n = 12), increased self-efficacy (n = 5), and adjusted emotions (n = 2) and behaviors (n = 6). Motivational factors were the group-administered intervention (n = 6) and the physical therapists’ communication skills (n = 10). The intervention was perceived as having a positive impact on sleep (n = 3), well-being (n = 6), and activity/ability to perform activities (n = 8).ConclusionOlder adults understand PNE concepts and reconceptualize pain. PNE and exercise were perceived as having a positive impact on day-to-day life.Practice ImplicationsMode of administration, communication skills, and rapport are aspects of the intervention that are valued by older adults. Also, PNE might be used as a strategy to increase older adults’ adherence to physical activity.     

Relationship between Teach-back and patient-centered communication in primary care pediatric encounters

ObjectiveWe proposed and tested a theoretical framework for how use of Teach-back could influence communication during the pediatric clinical encounter.MethodsAudio-taped pediatric primary care encounters with 44 children with asthma were coded using the Roter Interaction Analysis System to measure patient-centered communication and affective engagement of the parent. A newly created Teach-back Loop Score measured the extent to which Teach-back occurred during the clinical encounter; parental health literacy was measured by Newest Vital Sign. Logistic regression was used to test the relationship between Teach-back and features of communication. Focus groups held separately with clinicians and parents elicited perceptions of Teach-back usefulness.ResultsTeach-back was used in 39% of encounters. Visits with Teach-back had more patient centered communication (p = 0.01). Adjusting for parent health literacy, parent age, and child age, Teach-back increased the odds of both patient centered communication [proportional AOR (95% CI) = 4.97 (4.47–5.53)]and negative affect [AOR (95% CI) = 5.39 (1.68–17.31)]. Focus group themes common to clinicians and parents included: Teach-back is effective, could cause discomfort, should be used with children, and nurses should use it.ConclusionsTeach-back was associated with more patient-centered communication and increased affective engagement of parents.Practice implicationsStandardizing Teach-back use may strengthen patient-centered communication.     

One additional educational session in inhaler use to patients with COPD in primary health care – A controlled clinical trial

ObjectiveTo investigate whether one additional educational session about inhaler use, delivered to patients with COPD in primary healthcare, could affect the patients’ skills in inhaler use. Specifically, to study the effects on errors related to handling the device, to inhalation technique, and to both.MethodsThis nonrandomized controlled clinical trial included 64 patients who used devices and made errors. COPD nurses assessed inhaler use using a checklist and educated patients. Intervention group received one additional educational session after two weeks.ResultsAt baseline, patients in the IG had more devices (n = 2,1) compared to patients in the CG (n = 1,6) (p = 0.003). No other statistically significant differences were seen at baseline. At follow-up, intervention group showed a lower proportion of patients who made errors related to handling the device (p = 0.006). No differences were seen in the other categories.ConclusionOne additional educational session in inhaler use for patients with COPD was effective in reducing the proportion of patients making errors related to handling of their devices.Practice implications:Categorization of errors might help healthcare professionals to assess the suitability of patients’ devices, tailor patient education, and thus improve patient health.     

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

ObjectiveTo understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services.MethodsFive databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised.Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence.ConclusionParents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers.Practice implicationsInterventions are needed which address the transitional care needs of parents as well as young people.     

Decision making about anti-TNF therapy: A pilot trial of a shared decision-making intervention

ObjectiveWe conducted a pre-post pilot trial to determine the feasibility and acceptability of a multi-component intervention (pre-clinic letter, shared decision making cards and follow-up phone call) designed to facilitate SDM in pediatric inflammatory bowel disease (IBD).MethodsWe recruited physicians (n = 11) caring for IBD patients and families (n = 36) expected to discuss anti-tumor necrosis treatment. We measured feasibility and acceptability of the intervention, observed SDM, perceived SDM, decision conflict, and regret. Medical records were used to assess clinical outcomes, time to decision and adherence. We compared all outcomes between the usual care and intervention study arms.ResultsTwo out of three intervention components were feasible. Visit length increased significantly in the intervention arm. Parents and patients rated the intervention as acceptable, as did most physicians. The intervention was associated with a higher-level of observed SDM. There was no difference perceived SDM, decision conflict, regret or quality of life outcomes between arms. Physician global assessment improved over time in the intervention arm.ConclusionsThis pilot trial provides important guidance for developing a larger scale trial of a modified intervention.Practice implicationsOverall, our intervention shows promise in supporting SDM and engaging both parents and patients in pediatric IBD decisions.