Mind the gap: Comparing parents' information needs about impending preterm birth to current clinical practices using a mixed methods approach.

Objective: To identify parents' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands. Methods: Step 1: We surveyed N = 203 parents of preterm infants to assess their information needs. Data were analyzed using inductive thematic analysis. Step 2a: We collected information resources from hospitals (N = 9 NICUs) and via an online search. These materials were analyzed using deductive thematic analysis. Step 2b: We compared findings from Steps 1-2a. Results: We identified four themes pertaining to parents' information needs: (1) participation in care, (2) emotional wellbeing, (3) experience/success stories, and (4) practical information about prematurity. Clinicians' communicative skills and time were considered prerequisites for optimal information-provision. Notably, hospital resources provided mainly medical information about prematurity with some emphasis on participation in care, while parent associations mainly focused on emotional wellbeing and experience/success stories. Conclusion: While parents demonstrate clear information needs about impending very preterm birth, current information resources satisfy these partially. Innovation: Our multidisciplinary research team included both scholars and veteran NICU parents. As such, we identified parents' information needs bottom-up. These parent-driven insights will be used to design an innovative, tailored information platform for parents about impending very preterm birth.

Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment.

INTRODUCTION: Ageing in place (AIP) for persons with dementia is encouraged by European governments and societies. Healthcare packages may need reassessment to account for the preferences of care funders, patients and informal caregivers. By providing insight into people's preferences, discrete choice experiments (DCEs) can help develop consensus between stakeholders. This protocol paper outlines the development of a Dutch national study to cocreate a healthcare package design methodology built on DCEs that is person-centred and helps support informal caregivers and persons with dementia to AIP. A subpopulation analysis of persons with dementia with a migration background is planned due to their high risk for dementia and under-representation in research and care. METHODS AND ANALYSIS: The DCE is designed to understand how persons with dementia and informal caregivers choose between different healthcare packages. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs and preferences of persons with dementia and informal caregivers. The DCE will identify individual and joint preferences to AIP. The relative importance of each attribute will be calculated. The DCE data will be analysed with the use of a random parameters logit model. ETHICS AND DISSEMINATION: Ethics approval was waived by the Amsterdam University Medical Center (W23_112 #23.137). A study summary will be available on the websites of Alzheimer Nederland, Pharos and Amsterdam Public Health institute. Results are expected to be presented at (inter)national conferences, peer-reviewed papers will be submitted, and a dissemination meeting will be held to bring stakeholders together. The study results will help improve healthcare package design for all stakeholders.

Argumentation in end-of-life conversations with families in Dutch intensive care units: a qualitative observational study.

PURPOSE: In intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open exchange of standpoints and underlying arguments between doctors and families to arrive at the most appropriate decision. Yet, it is still largely unknown how doctors and families argue in real-life conversations. This study aimed to (1) identify which arguments doctors and families use in support of standpoints to continue or discontinue LST, (2) investigate how doctors and families structure their arguments, and (3) explore how their argumentative practices unfold during conversations. METHOD: A qualitative inductive thematic analysis of 101 audio-recorded conversations between doctors and families. RESULTS: Seventy-one doctors and the families of 36 patients from the neonatal, pediatric, and adult ICU (respectively, N-ICU, P-ICU, and A-ICU) of a large university-based hospital participated. In almost all conversations, doctors were the first to argue and families followed, thereby either countering the doctor's line of argumentation or substantiating it. Arguments put forward by doctors and families fell under one of ten main types. The types of arguments presented by families largely overlapped with those presented by doctors. A real exchange of arguments occurred in a minority of conversations and was generally quite brief in the sense that not all possible arguments were presented and then discussed together. CONCLUSION: This study offers a detailed insight in the argumentation practices of doctors and families, which can help doctors to have a sharper eye for the arguments put forward by doctors and families and to offer room for true deliberation.

Dyadic Discrete Choice Experiments Enable Persons with Dementia and Informal Caregivers to Participate in Health Care Decision Making: A Mixed Methods Study.

BACKGROUND: Discrete choice experiments (DCEs) may facilitate persons with dementia and informal caregivers to state care preferences. DCEs can be cognitively challenging for persons with dementia. OBJECTIVE: This study aims to design a dementia friendly dyadic DCE that enables persons with dementia and informal caregivers to provide input individually and jointly, by testing the number of attributes and choice tasks persons with dementia can complete and providing insight in their DCE decision-making process. METHODS: This study included three DCE rounds: 1) persons with dementia, 2) informal caregivers, and 3) persons with dementia and informal caregivers together. A flexible DCE design was employed, with increasing choice task complexity to explore cognitive limitations in decision-making. Summary statistics and bivariate comparisons were calculated. A qualitative think-aloud approach was used to gain insight in the DCE decision-making processes. Transcripts were analyzed using thematic analysis. RESULTS: Fifteen person with dementia, 15 informal caregiver, and 14 dyadic DCEs were conducted. In the individual DCE, persons with dementia completed six choice tasks (median), and 80% could complete a choice task with least three attributes. In the dyadic DCE persons with dementia completed eight choice tasks (median) and could handle slightly more attributes. Qualitative results included themes of core components in DCE decision-making such as: understanding the choice task, attribute and level perception, option attractiveness evaluation, decision rule selection, and preference adaptation. CONCLUSION: Persons with dementia can use simple DCE designs. The dyadic DCE was promising for dyads to identify overlapping and discrepant care preferences while reaching consensus.

An international study on implementation and facilitators and barriers for parent-infant closeness in neonatal units.

Importance: Parent-infant closeness and active parent participation in neonatal care are important for parent and infant health. Objective: To give an overview of current neonatal settings and gain an in-depth understanding of facilitators and barriers to parent-infant closeness, zero-separation, in 19 countries. Methods: Neonatal intensive care unit (NICU) professionals, representing 45 NICUs from a range of geographic regions in Europe and Canada, were purposefully selected and interviewed June-December 2018. Thematic analysis was conducted to identify, analyze and report patterns (themes) for parent-infant closeness across the entire series of interviews. Results: Parent-infant separation during infant and/or maternity care is very common (42/45 units, 93%), despite the implementation of family integrated care (FICare) practices, including parent participation in medical rounds (17/45, 38%), structured education sessions for parents (16/45, 36%) and structured training for healthcare professionals (22/45, 49%). NICU professionals encountered four main themes with facilitators and barriers for parent-infant closeness on and between the hospital, unit, staff, and family level: Culture (jointly held characteristics, values, thinking and behaviors about parental presence and participation in the unit), Collaboration (the act of working together between and within different levels), Capacities (resources and policies), and Coaching (education to acquire and transfer knowledge and skills). Interpretation: Implementing parent-infant closeness in the NICU is still challenging for healthcare professionals. Further optimization in neonatal care towards zero-separation and parent-infant closeness can be achieved by enforcing the 'four Cs for Closeness': Culture, Collaboration, Capacities, and Coaching.

Co-creating sensible care plans using shared decision making: Patients' reflections and observations of encounters.

OBJECTIVE: To evaluate how the use of a within-encounter SDM tool (compared to usual care in a randomized trial) contributes to care plans that make sense to patients with atrial fibrillation considering anticoagulation. METHODS: In a planned subgroup of the trial, 123 patients rated post-encounter how much sense their decided-upon care plan made to them and explained why. We explored how sense ratings related to observed patient involvement (OPTION12), patient's decisional conflict, and adherence to their plan based on pharmacy records. We analyzed patient motives using Burke's pentad. RESULTS: Plan sensibility was similarly high in both arms (Usual care n = 62: mean 9.4/10 (SD 1.0) vs SDM tool n = 61: 9.2/10 (SD 1.5); p = .8), significantly and weakly correlated to decisional conflict (rho=-0.28, p = .002), but not to OPTION12 or adherence. Plans made sense to most patients given their known efficacy, safety and what is involved in implementing them. CONCLUSION: Adding an effective intervention to promote SDM did not affect how much, or why, care plans made sense to patients receiving usual care, nor patient adherence to them. PRACTICE IMPLICATIONS: Evaluating the extent to which care plans make sense can improve SDM assessments, particularly when SDM extends beyond selecting from a menu of options.

Fostering Patient Choice Awareness and Presenting Treatment Options Neutrally: A Randomized Trial to Assess the Effect on Perceived Room for Involvement in Decision Making.

PURPOSE: Shared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference. Evidence for the effectiveness of these communication strategies to enhance patient involvement in treatment decision making is lacking. We tested the effects of 2 strategies in an online randomized video-vignettes experiment. METHODS: We developed disease-specific video vignettes for rheumatic disease, cancer, and kidney disease showcasing a physician presenting 2 treatment options. We tested the strategies in a 2 (choice awareness communication present/absent) by 2 (physician preference communication present/absent) randomized between-subjects design. We asked patients and disease-naïve participants to view 1 video vignette while imagining being the patient and to report perceived room for involvement (primary outcome), understanding of treatment information, treatment preference, satisfaction with the consultation, and trust in the physician (secondary outcomes). Differences across experimental conditions were assessed using 2-way analyses of variance. RESULTS: A total of 324 patients and 360 disease-naïve respondents participated (mean age, 52 ± 14.7 y, 54% female, 56% lower educated, mean health literacy, 12 ± 2.1 on a 3-15 scale). The results showed that choice awareness communication had a positive (Mpresent = 5.2 v. Mabsent = 5.0, P = 0.042, η2partial = 0.006) and physician preference communication had no (Mpresent = 5.0 v. Mabsent = 5.1, P = 0.144, η2partial = 0.003) significant effect on perceived room for involvement in decision making. Physician preference communication steered patients toward preferring that treatment option (Mpresent = 4.7 v. Mabsent = 5.3, P = 0.006, η2partial = 0.011). The strategies had no significant effect on understanding, satisfaction, or trust. CONCLUSIONS: This is the first experimental evidence for a small effect of fostering choice awareness and no effect of physician preference on perceived room to participate in decision making. Physician preference steered patients toward preferring that option.

Persons with dementia and informal caregivers prioritizing care: A mixed-methods study.

INTRODUCTION: More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community-dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community-dwelling persons with dementia and informal caregivers with the use of an innovative mixed-methods approach. METHODS: Six mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis. RESULTS: The ranking exercise and discussion showed that persons with dementia favored in-home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support. DISCUSSION: Persons with dementia prioritized day-to-day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers.

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

OBJECTIVE: To 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. METHODS: Systematic 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. RESULTS: 5586 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. CONCLUSIONS: Parent-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.

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

OBJECTIVE: To 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. METHODS: Semi-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. RESULTS: Communication 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. CONCLUSION: This 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 IMPLICATIONS: The 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.

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

OBJECTIVE: To 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. METHODS: A 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. RESULTS: 43 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. CONCLUSION: The 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 IMPLICATIONS: Findings can be used to improve NICU communication in practice, in particular through the mnemonic TAILORED.

Application of the theory of regulatory fit to promote adherence to evidence-based breast cancer screening recommendations: experimental versus longitudinal evidence.

OBJECTIVES: To reduce overtreatment caused by overuse of screening, it is advisable to reduce the demand for mammography screening outside the recommended guidelines among women who are not yet eligible for inclusion in systematic screening programmes. According to principles of regulatory fit theory, people make decisions motivated by either orientation to achieving and maximising gains or avoiding losses. A study developed in two phases investigated whether video messages, explaining the risks and benefits of mammography screening for those not yet eligible, are perceived as persuasive DESIGN: Phase 1 was an experimental study in which women's motivation orientation was experimentally induced and then they were exposed to a matching video message about mammography screening. A control group received a neutral stimulus. Phase 2 introduced a longitudinal component to study 1, adding a condition in which the messages did not match with the group's motivation orientation. Participants' natural motivation orientation was measured through a validated questionnaire PARTICIPANTS: 360 women participated in phase 1 and another 292 in phase 2. Participants' age ranged from 30 to 45 years, and had no history of breast cancer or known BReast CAncer gene (BRCA) 1/2 mutation. RESULTS: In phase 1, a match between participants' motivation orientation and message content decreased the intention to seek mammography screening outside the recommended guidelines. Phase 2, however, did not show such an effect. Fear of breast cancer and risk perception were significantly related to intention to seek mammography screening CONCLUSIONS: Public health researchers should consider reducing the impact of negative emotions (ie, fear of breast cancer) and risk perception when promoting adherence to evidence-based breast cancer screening recommendations.

Developing a digital training tool to support oncologists in the skill of information-provision: a user centred approach.

BACKGROUND: For patients with cancer, being well informed by their oncologist about treatment options and the implications thereof is highly relevant. Communication skills training (CST) programs have shown to be effective in improving clinicians' communication skills, yet CSTs are time-consuming, inconvenient to schedule, and costly. Online education enables new ways of accessible learning in a safe and personalised environment. AIM AND METHODS: We describe the design of a digital CST-tool for information provision skills that meets oncologists' learning needs. We used the CeHRes Roadmap for user-centred design as a guiding framework. Phase 1 (Contextual Inquiry) involved consultation of the literature and a focus group interview study to uncover the learning needs and training preferences of clinicians' regarding a digital training for the skill of information-provision. In phase 2 (Value Specification), two multidisciplinary expert panels specified the learning content and format of a digital training. Phase 3 (Design) encompassed an iterative development process, including two user group assessment sessions and 5 individual user sessions in which prototypes were tested. All sessions were recorded and independently analyzed by two researchers. RESULTS: Based on literature and consultation of the users in the inquiry phase of the development process, and on expert opinion in the value specification phase, relevant (sub) skills and user requirements were defined to consider for the digital training format. It was decided to develop a conventional e-learning and a chatbot. Personalization and interactivity were integrated in the prototypes by including features that allow for e.g., choosing text, video or animation; to upload video-recorded consultations to receive peer-feedback; and to consult a communication expert. Results revealed that, overall, participants expressed a willingness to use a digital training tool to acquire information-provision skills. Individual user testing (including junior clinicians), indicated a preference for the chatbot over the e-learning. CONCLUSION: We offer a description of extensive development work which was conducted in collaboration with multiple health care professionals to iteratively develop two innovative prototypes of digital tools that would appropriately engage oncologists in learning effective information giving skills. The resulting prototypes were well appreciated and thus provide a solid basis for further development and testing.

Mammography perceptions and practices among women aged 30-49: The role of screening programme availability and cultural affiliation.

OBJECTIVE: To explore the role of systematic screening programme availability and cultural affiliation as drivers of mammography perceptions/practices among women aged 30-49, who are not eligible for screening. METHODS: Cross-sectional survey about mammography perceptions/practices among N = 918 Swiss women (30-49), across three cultural-linguistic regions (Swiss-German, Swiss-French, Swiss-Italian) and 26 cantons. RESULTS: In cantons offering systematic screening programmes, women appeared more likely to ask for a mammogram, felt more susceptible to breast cancer, and perceived more benefits to screening. Swiss-German women engaged less in screening and felt less susceptible to breast cancer than women in other cultural-linguistic regions. Within the Swiss-German region, women living in cantons with programmes were more likely to ask for a mammogram than in cantons without. CONCLUSIONS: Programme availability and cultural affiliation both appear related to young women's screening perceptions/practices. While the interaction between these factors should be further explored, this study provides some preliminary evidence that cultural affiliation is the more important driver. PRACTICE IMPLICATIONS: Health communication efforts should consider the impact of these drivers on women's intentions to have a mammogram, prior to the recommended age. Tailored communication - public and interpersonal - should be directed towards facilitating informed decision-making and avoidance of mammography overuse.

Provider caring and structuring treatment information to improve cancer patients' recall: Does it help?

OBJECTIVES: Patient recall of medical information is usually poor. Healthcare providers can employ affect-oriented (i.e., showing care) or cognition-oriented communication styles (i.e., structuring information) to enhance recall, but research evidence is limited especially among clinical and/or older patient populations. This video-vignette study manipulated provider caring and information structuring to examine effects on recall and trust among cancer patients/survivors. METHODS: In an online survey, 148 participants (Mage = 62) were randomized to one of four video conditions in a two (standard communication vs. enhanced caring) by two (standard vs. enhanced structuring) design, and completed measures of active recall, recognition, and trust. RESULTS: Increased caring or structuring did not enhance active recall or recognition, instead both were higher among younger, female, or highly educated participants. The caring condition induced higher perceived trust in the provider within the whole sample, but trust was significantly correlated with decreased recall (r = -.268) among younger participants. CONCLUSIONS: Provider caring can strengthen the patient-provider relationship by enhancing trust. Yet, increased trust may impair recall among younger patients. Structuring treatment information did not enhance recall and recognition, but additional research is needed. PRACTICE IMPLICATIONS: Providers may use additional ways of structuring/organizing information to help enhance recall (e.g., written information).

Tailoring the amount of treatment information to cancer patients' and survivors' preferences: Effects on patient-reported outcomes.

OBJECTIVES: Tailoring medical information to cancer patients' needs is recommended, but there is little guidance on how to tailor, and limited research exists about its effects. Tailoring to the amount of preferred information may be easily implementable in clinic and is tested here. METHODS: A video-vignette experiment was used to systematically vary video patients' information preferences (limited/extensive) and amount of provided information (additional/no additional). N = 253 cancer patients/survivors evaluated these video-recorded consultations, serving as analogue patients (APs), and completed outcome measures. RESULTS: Tailoring information to video patients' preferences had no effect on APs' evaluation of the consultation (satisfaction, trust). Yet, there was a main effect of APs' own information preferences: Those preferring extensive information recalled (MΔ = 5.8%) and recognized (MΔ = 3.5%) more information than those preferring limited information. Moreover, information provision mattered among APs who preferred limited information: They recognized even less if provided with extensive information. CONCLUSIONS: Tailoring to the amount of video patient's information preferences did not affect APs' evaluation of the consultation (satisfaction, trust), while APs' personal information preferences determined their recall and recognition of medical information. PRACTICE IMPLICATIONS: Information preferences should be assessed and tailored to in clinical practice. Overwhelming patients/survivors, who prefer limited information, should be prevented.

Developing a digital communication training tool on information-provision in oncology: uncovering learning needs and training preferences.

BACKGROUND: Adequate information-provision forms a crucial component of optimal cancer care. However, information-provision is particularly challenging in an oncology setting. It is therefore imperative to help oncological health care practitioners (HCP) optimise their information-giving skills. New forms of online education, i.e. e-learning, enable safe and time and location independent ways of learning, enhancing access to continuous learning for HCP. As part of a user-centred approach to developing an e-learning to improve information-giving skills, this study aims to: 1) uncover the learning needs of oncological healthcare providers related to information- provision, and 2) explore their training preferences in the context of clinical practice. METHODS: Focus groups and interviews were organised with oncological HCP (medical specialists and clinical nurse specialists) addressing participants' learning needs concerning information- provision and their training preferences with respect to a new digital training tool on this issue. All sessions were audiorecorded and transcribed verbatim. Using an inductive approach, transcripts were independently coded by three researchers and discussed to reach consensus. Main themes were summarised and discussed. RESULTS: Four focus group sessions (total n = 13) and three interviews were conducted. The first theme concerned the patient outcomes HCP try to achieve with their information. We found HCP to mainly strive to promote patients' understanding of information. The second theme concerned HCP reported strategies and challenges when trying to inform their patients. These entailed tailoring of information to patient characteristics, structuring of information, and dealing with patients' emotions. Regarding HCP training preferences, an e-learning should be neatly connected to clinical practice. Moreover, participants desired a digital training to allow for feedback on their own (videotaped) information-giving skills from peers, communication experts, and/or patients; to monitor their progress and to tailored the training to individual learning needs. CONCLUSIONS: An e-learning for improvement of information-giving skills of oncological HCP should be aimed at the transfer of skills to clinical practice, rather than at enhancing knowledge. Moreover, an e-learning is probably most effective when the facilitates individual learning needs, supports feedback on competence level and improvement, and allows input from significant others (experts, peers, or patients).