Myeloma is the third most common blood cancer and one of the most complex and expensive cancers to treat. Black Americans face health disparities related to myeloma incidence, age at diagnosis, access to novel treatments, and mortality. To help reduce health disparities among Black Americans through education and outreach, the Leukemia & Lymphoma Society has implemented its Myeloma Link initiative. In 2022, a formative, qualitative evaluation was conducted across the 15 U.S. cities that implemented Myeloma Link to better understand the information and communication needs and preferences of three groups: patients, community members, and primary care providers (PCPs). Data collection included interviews with eight patients, two focus groups with a total of ten community members, and interviews with six PCPs. Patients expressed wanting information about treatment experiences, including clinical trials, and emotional and peer support services, particularly from other Black American patients. Community members were largely unfamiliar with myeloma and desired outreach via trusted community organizations about disease signs and symptoms. Both groups discussed the importance of self-advocacy within the current healthcare system and wanted actionable messaging, rather than messaging leading with disparities statistics. PCPs described systemic capacity and time challenges in the context of needing to address more frequently encountered health conditions; nonetheless, PCPs welcomed information and brief trainings about myeloma diagnosis and treatment options, referrals to specialists, and how to improve care, prognosis, and caregiver support. Findings underscore the importance of outreach initiatives such as Myeloma Link to help meet these needs and reduce health disparities.

UNASSIGNED: To identify parents\' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: While parents demonstrate clear information needs about impending very preterm birth, current information resources satisfy these partially.
UNASSIGNED: 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.

BACKGROUND: In the cultural milieu of China, family caregivers assume a pivotal role in the post-adolescent suicide attempt recovery journey. Nevertheless, they frequently encounter a dearth of requisite knowledge and information pertaining to the appropriate caregiving protocols for these adolescents. Notwithstanding, scholarly investigation into the informational requisites of this demographic concerning caregiving remains significantly constrained.
METHODS: Between September and December 2023, a phenomenological approach was applied in qualitative research. Semi-structured interviews were undertaken with 15 family caregivers of adolescents who had experienced suicide attempts. The amassed data underwent systematic organization and analysis through the utilization of the Colaizzi method.
RESULTS: Four primary themes were identified: (1) negative emotional encounters; (2) requirements for addressing dilemmas; (3) addressing the needs of the unknown; and (4) insufficient access to support.
CONCLUSIONS: Family caregivers experience complex negative emotions upon learning about a teenager\'s suicide attempt. Throughout the caregiving process, they face numerous challenges, with apparent lack of external support, leading to an increased urgent need for caregiving information. Healthcare professionals, especially nurses, should actively identify and respond to the informational needs of family caregivers when caring for adolescents who have attempted suicide. This includes providing education on various coping mechanisms and support strategies, as well as assisting them in better understanding how to effectively manage the stress and challenges of caregiving. By doing so, healthcare professionals can help alleviate the psychological and emotional burden on family caregivers, thereby enhancing their caregiving abilities and overall well-being.

OBJECTIVE: To understand preoperative experiences and information needs of Chinese school-aged children undergoing elective surgery to design standardized preoperative education programs to alleviate preoperative anxiety.
METHODS: Semi-structured interviews combined with drawing, writing, and telling techniques were conducted in 12 children. The paintings were interpreted alongside children\'s verbal expressions. All data were analyzed using thematic analysis.
RESULTS: Three themes emerged: Origins of Surgical Knowledge: Proximity-based knowledge, media exposure, past personal medical experiences, ward-mate interactions, healthcare staff education; Pre-Surgery Experiences: Anticipation of pain, post-op sensations and impact on life, fantasizing about the operation, being aware of risks, demonstrating psychological resilience, being curious about anesthesia experience, enjoying a break; Preoperative Informational Needs: 55 identified.
CONCLUSIONS: Lack of standardized preoperative education creates a gap between children\'s knowledge and actual surgical experiences. Developing preoperative education tailored to individualized informational needs and developmental level helps fill their gaps, alleviate preoperative anxiety and improve health outcomes.

The communication of e-Health has been transformed with the advancement of information technologies, therefore it is feasible to carry out studies in the context of health professionals\' interactions. Objective: This study aimed to design and validate a preliminary questionnaire to investigate the context of the communications of health professionals through information technologies considering three significant dimensions. Method: The stages provided by Hernández Sampieri guided the building, validation through Cronbach\'s alpha and factorial analysis. The questionnaire was applied to 43 participants who simulated health professionals. Results: We obtained an instrument that includes a demographic data section and 20 items distributed into three factors. Internal consistency reliability with Cronbach\'s alpha values generally of 0.848 and higher than 0.811 was obtained in each dimension. Kaiser-Meyer-Olkin\'s measure of sampling adequacy was regular, with 0.781, and Bartlett\'s test of sphericity was significant (p < 0.001). Conclusion: It is necessary to apply in real-world environments to reaffirm the results obtained.

OBJECTIVE: We aimed to: (1) summarize the quantitative evidence on the information needs of relatives of childhood cancer patients, survivors, and children deceased from cancer; and (2) identify factors associated with these needs.
METHODS: PubMed, PsycINFO, Scopus, and CINAHL were systematically searched. The methodological quality of all included publications was assessed, and the extracted data were analyzed using narrative synthesis.
RESULTS: Of 5810 identified articles, 45 were included. Information needs were classified as unmet, met (satisfied), and unspecified and categorized into five domains: medical information, cancer-related consequences, lifestyle, family, and support. Most unmet information needs concerned cancer-related consequences (e.g., late effects), while information needs on support were generally met. Migrant background and higher education were associated with higher information needs among parents. Siblings had lower information needs than parents.
CONCLUSIONS: This systematic review provides a comprehensive overview of the information needs of relatives in the context of childhood cancer, showing that information on cancer-related consequences is needed most often. The socioeconomic background of the relatives needs continued consideration throughout the cancer trajectory.
CONCLUSIONS: Our findings suggest the need for personalized information. Healthcare professionals should adapt their communication strategies to respond to the different and evolving needs of all affected relatives.

Many families of adults with intellectual and/or developmental disabilities in India experience difficulty in accessing services/supports, due to lack of awareness/knowledge of disability rights/laws and available services, and in accessing the services. There remains insufficient research on the information needs of these caregivers and on designing interventions that aim to increase their awareness/knowledge about human rights and supports/services. A strengths-based mixed methods needs assessment was conducted to understand the information needs of these family caregivers. Results showed that caregivers ≥50 years had significantly higher information needs than younger caregivers. Specifically, caregivers with no proficiency in English needed more information on the available services for the care recipients (n = 100). Qualitative results showed that very few caregivers had any awareness or access to information on human rights, disability-related laws/policies or available supports/services (n = 15). Study findings underscore the government\'s role in improving awareness-raising initiatives and imparting the information in multiple Indian languages.

BACKGROUND: The 5.8 million Ukrainian refugees arriving in European countries must navigate varying healthcare systems and different and often unknown languages in their respective host countries. To date, there has been little exploration of the experiences, perceived differences, information and support needs of these refugees regarding the use of healthcare in Germany.
METHODS: We conducted ten qualitative interviews with Ukrainian refugees living in Germany from February to May 2023, using Ukrainian, English and German language. The transcribed interviews were analysed using the qualitative content analysis method according to Kuckartz and Rädiker with the MAXQDA software.
RESULTS: In general, participants consistently had a positive experience of the German healthcare system, particularly regarding the quality of treatments and insurance. Differences have been reported in the structure of the healthcare systems. The Ukrainian healthcare system is divided into private and state sectors, with no mandatory insurance and frequent out-of-pocket payments. Pathways differ and tend to focus more on clinics and private doctors. General practitioners, often working in less well-equipped offices, have only recently gained prominence due to healthcare system reforms. Initiating contact with doctors is often easier, with much shorter waiting times compared to Germany. Interviewees often found the prescription requirements for many medications in Germany to be unusual. However, the mentioned differences in healthcare result in unmet information needs among the refugees, especially related to communication, navigating the healthcare system, health insurance, waiting times and medication access. These needs were often addressed through personal internet research and informal (social media) networks because of lacking official information provided during or after their arrival.
CONCLUSIONS: Despite the positive experiences of Ukrainian refugees in the German healthcare system, differences in the systems and language barriers led to barriers using healthcare and information needs among refugees. The dissemination of information regarding characteristics of the German health care system is crucial for successful integration but is currently lacking.
BACKGROUND: German Clinical Trials Register: DRKS00030942, date of registration: 29.12.2022.

BACKGROUND: Shared decision-making (SDM) is a patient-centred approach to improve the quality of care. An essential requirement for the SDM process is to be fully aware of patient information needs.
OBJECTIVE: Our study aimed to assess patient information needs for new antidiabetic medications using the best-worst scaling (BWS) experiment.
METHODS: BWS tasks were developed according to a literature review and the focus group discussion. We used a balanced incomplete block design and blocking techniques to generate choice sets. The final BWS contains 11 attributes, with 6-choice scenarios in each block. The one-to-one, face-to-face BWS survey was conducted among type 2 diabetic patients in Jiangsu Province. Results were analyzed using count-based analysis and modelling approaches. We also conducted a subgroup analysis to observe preference heterogeneity.
RESULTS: Data from 539 patients were available for analysis. The most desired information domain was the comparative effectiveness of new antidiabetic medications. It consists of the incidence of macrovascular complications, the length of extended life years, changes in health-related quality of life, the incidence of microvascular complications, and the control of glycated haemoglobin. Of all the attributes, the incidence of macrovascular complications was the primary concern. Patients\' glycemic control and whether they had diabetes complications exerted a significant influence on their information needs.
CONCLUSIONS: Information on health benefits is of critical significance for diabetic patients. Patients have different information needs as their disease progresses. Personalized patient decision aids that integrate patient information needs and provide evidence of new antidiabetic medications are worthy of being established.
UNASSIGNED: Before data collection, a pilot survey was carried out among diabetic patients to provide feedback on the acceptability and intelligibility of the attributes.

BACKGROUND: Globally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID\'s physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa.
METHODS: This qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers.
RESULTS: The findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services.
CONCLUSIONS: Given the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.