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Objective: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia.Methods: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects.Results: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care.Conclusion: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups.Practice Implications: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care. [ABSTRACT FROM AUTHOR]

High-quality communication can mitigate suffering during serious illness. Innovations in theory and technology present the opportunity to advance serious illness communication research, moving beyond inquiry that links broad communication constructs to health outcomes toward operationalizing and understanding the impact of discrete communication functions on human experience. Given the high stakes of communication during serious illness, we see a critical need to develop a basic science approach to serious illness communication research. Such an approach seeks to link "what actually happens during a conversation" - the lexical and non-lexical communication content elements, as well as contextual factors - with the emotional and cognitive experiences of patients, caregivers, and clinicians. This paper defines and justifies a basic science approach to serious illness communication research and outlines investigative and methodological opportunities in this area. A systematic understanding of the building blocks of serious illness communication can help identify evidence-informed communication strategies that promote positive patient outcomes, shape more targeted communication skills training for clinicians, and lead to more tailored and meaningful serious illness care. [ABSTRACT FROM AUTHOR]

Background: Opportunities to enhance opioid medication safety among children are frequently overlooked. There is little information about what information caregivers want when a child receives an opioid prescription following surgery.Objective: This paper explores pediatric caregivers' baseline knowledge and expectations for opioid medication consults in order to refine an opioid safety consultation intervention. Second, it, assesses caregivers' post-consult knowledge and evaluation after they received the refined opioid safety consultation.Patient Involvement: Pediatric patient caregivers were involved in designing and evaluating an opioid education intervention.Methods: Fifteen pediatric caregivers were interviewed about opioid consultations in the pre-intervention phase to inform the design of the subsequent opioid risk and safety consultation intervention. An opioid safety consultation intervention was then developed. Another 15 pediatric caregivers were interviewed in the post-intervention phase to explore impact of the revised intervention. Inductive content analysis was used to analyze data.Results: Caregivers in the pre-intervention phase reported some knowledge about opioids, wanted to know if their child was prescribed an opioid and wanted information about its opioid risks and safety. Caregivers in the post-intervention phase reported an increase in knowledge about opioid risks and safety, recognized benefit of pharmacists describing the medication as an "opioid", appreciated the handout and were satisfied with the topics covered in the consultation.Discussion: Discussing opioid risks can be uncomfortable for pharmacists and patients. This study explored pediatric caregivers' expectations about opioid consults and information they wanted to receive from pharmacists. This was used to develop a patient-centered education intervention which was then evaluated by caregivers for effectiveness, convenience, and comfort.Practical Value: This study reports pediatric caregivers' perspectives and expectations about opioid consults which provide guidance for pharmacists to facilitate open and informative counseling for opioid medications. [ABSTRACT FROM AUTHOR]

Supporting childhood cancer survivors with neurocognitive late effects is critical and requires additional attention in the research arena. This convening project's aim was to engage parents, healthcare providers, and education stakeholders in order to identify research priorities regarding patient/family-provider communication about neurocognitive impacts associated with childhood cancer. Specific components of the Stakeholder Engagement in quEstion Development (SEED) method were combined with an online e-Delphi consensus building approach. Multiple modalities were utilized for engagement including in-person/hybrid meetings, email/Zoom/call communications, targeted-asynchronous learning activities by stakeholders, iterative surveys, and hands-on conceptual modeling. Twenty-four (parents n = 10, educators n = 5, healthcare providers n = 9) participated in the year-long project, generating 8 research questions in the stakeholder priority domains of training families/caregiver, access of neuropsychological assessment, tools to facilitate communication and training medical providers. This paper illustrates a successful stakeholder convening process using multi-modal engagement to establish research priorities. The resulting questions can be utilized to guide research projects that will fill gaps to providing optimal care to children with neurocognitive late effects. This process can be used as a template for tackling other healthcare issues that span across disciplines and domains, where stakeholders have rare opportunities to collaborate. • Stakeholder involvement is critical for identifying research priorities that are relevant. • The Stakeholder Engagement in quEstion Development (SEED) method and online e-Delphi can be used for consensus building. • Parent stakeholders who participate in research training modules can contribute to meaningful collaboration. [ABSTRACT FROM AUTHOR]

Objective: The objective of this paper is to understand patient, caregiver and hospice admission nurses needs during the hospice admission conversation so patients and their caregivers can make informed decisions about hospice.Methods: Resulting data set from this qualitative study included 60 h of observation and a total of 30 interviews with caregivers, patients and hospice admission nurses. Participants were from a large non-profit hospice; observation settings included: home, hospital and skilled nursing facility.Results: Four themes were identified: (1) Wide variation in patient knowledge of hospice care prior to the admission conversation, (2) competing expectations and objectives for the admission conversation between patients, caregivers and hospice admission team members, (3) organizational influences around the goals of the admission conversation, (4) importance of integrating the patient and caregiver perspective to improve the quality of admission conversations.Conclusion: Hospice services provided may be inconsistently explained by hospice personnel and therefore, can be misunderstood by patients and families. With the ubiquitous challenges surrounding hospice admission consults, there is a critical need for complete and accurate information during the admission process.Practice Implications: Providing accurate and pertinent information at the time of the admission consult can help mitigate misinformed expectations of services provided. [ABSTRACT FROM AUTHOR]

Relationship behaviors contribute to compromised health or resilience. Everyday communication between intimate partners represents the vast majority of their interactions. When intimate partners take on new roles as patients and caregivers, everyday communication takes on a new and important role in managing both the transition and the adaptation to the change in health status. However, everyday communication and its relation to health has been little studied, likely due to barriers in collecting and processing this kind of data. The goal of this paper is to describe deterrents to capturing naturalistic, day-in-the-life communication data and share how technological advances have helped surmount them. We provide examples from a current study and describe how we anticipate technology will further change research capabilities. [ABSTRACT FROM AUTHOR]

eEhealth programs are a promising way to support and empower people with advanced cancer and their family caregivers. An intervention that has been proven effective in decreasing distress and improving quality of life in patients and family caregivers is the FOCUS program, developed and tested in the USA. FOCUS has already been adapted to a face-to-face program named FOCUS+ which functioned as a base for development of the web-based iFOCUS program. The aim of this paper is to describe the translation from FOCUS+ to the self-managed web-based iFOCUS program and the challenges we encountered. Five teams were involved across seven steps of development; a research team, a web-development team, an international consortium, other audio-visual experts and potential end-users. We conducted user- and functional testing of program before implementing it in a Randomized Controlled Trial. We identified seven core features for the web-based program, i.e. psycho-educational character, based on the five FOCUS components, variation in pedagogic approach and tailoring, tailoring, facilitates dyadic communication, complementary to regular care and available outside the hospital in the language of the dyad. Both generic and project-specific challenges were encountered during development. User- and functional testing showed that the program functioned well and was acceptable to users. Minor changes needed to be made to the content, tailoring and program flow. The program is introduced to patient-caregiver dyads through interpersonal contact. Implications of research: Developing a self-managed dyadic eHealth program has many challenges which sometimes are related to project-specific requirements such as facilitating dyadic communication, but also to eHealth development in general such as estimating program development cost. Some pedagogic features are easier to incorporate in a face-to-face intervention due to the fluid nature of conversations. The program is currently being tested in a large-scale international randomized clinical trial. Preliminary results are promising. [ABSTRACT FROM AUTHOR]

Objective: This paper describes the development of patient education from the 1960s until now and identifies future challenges to improve patient education. Results: Patient education developed from the health care professional deciding what the patient needed to know to a shared decision making design where physician and patient are equally influential on the decision making process. The development of patient education is described for primary and secondary health care, as well as the impact of biomedical advances, an ageing population and cultural diversity on patient education. Some of the challenges for future patient education are identified: training health professionals as well as patients, involvement of the patient''s social environment and application of e-Health techniques to patient education. Conclusion: Patient education has made several developmental changes, has spread to different settings in health care and has now finally established itself as a valuable part of health care for patients. Nevertheless, both patients and health professionals still need to be provided with skills to optimize patient education. A good science-practice fit for future interventions to facilitate patient education is paramount. Practice implication: Lessons from the past of patient education are important for the growth and future development of patient education. [Copyright &y& Elsevier]