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.

Design and validation of a preliminary instrument to contextualize interactions through information technologies of health professionals.

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.

Analyzing online forums to identify information needs and knowledge gaps in patients with left ventricular assist devices: a qualitative study.

AIM: To explore the knowledge and unmet informational needs of candidates for left ventricular assist devices (LVADs), as well as of patients, caregivers, and family members, by analyzing social media data from the MyLVAD.com website. METHODS AND RESULTS: A qualitative content analysis method was employed, systematically examining and categorizing forum posts and comments published on the MyLVAD.com website from March 2015 to February 2023. The data was collected using an automated script to retrieve threads from MyLVAD.com, focusing on genuine questions reflecting information and knowledge gaps. The study received approval from an ethics committee. The research team developed and continuously updated categorization matrices to organize information into categories and subcategories systematically. From 856 posts and comments analyzed, 435 contained questions representing informational needs, of which six main categories were identified: clothing, complications/adverse effects, LVAD pros and cons, self-care, therapy, and recent LVAD implantation. The self-care category, which includes managing the driveline site and understanding equipment functionality, was the most prominent, reflecting nearly half of the questions. Other significant areas of inquiry included complications/adverse effects and the pros and cons of LVAD. CONCLUSION: The analysis of social media data from MyLVAD.com reveals significant unmet informational needs among LVAD candidates, patients, and their support networks. Unlike traditional data, this social media-based research provides an unbiased view of patient conversations, offering valuable insights into their real-world concerns and knowledge gaps. The findings underscore the importance of tailored educational resources to address these unmet needs, potentially enhancing LVAD patient care.

Caregiving information needs of family caregivers of adolescent patients with suicide attempts: a qualitative study in China.

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.

Exploring Preoperative Experiences and Informational Needs Among Chinese School-Age Children Undergoing Elective Surgery: A Qualitative Study.

AIM: 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.

Community health information needs assessment in the mid-south region of the United States indicates new roles for public libraries.

BACKGROUND: Libraries provide public access to information that may be used to inform healthcare decisions. Exploring the health information needs of library-users could improve community health outcomes, especially during times of crisis like the COVID-19 pandemic. OBJECTIVE: The purpose of this study was to identify the health information needs of library-users to explore the potential role of libraries in advancing community health. METHODS: A quantitative, descriptive, cross-sectional survey was employed. RESULTS: One hundred and fifty participants in the (Memphis) Tennessee metropolitan area, ranging from 18 to 84 years of age, completed the survey between September 2020 and April 2021. Most respondents reported seeking physical and mental health-related information from libraries. In addition, nearly half of respondents reported delaying medical care due to risk of exposure to COVID-19, cost or appointment issues. DISCUSSION: Study results indicated that there were urgent health information needs among library-users in this community, that COVID-19 further limited or delayed access to information, and that library-users accessed health information during library visits. CONCLUSION: Public libraries have the potential to serve as information hubs to improve community health outcomes. Additional research should be conducted to collect qualitative community health information needs and the ways in which public library systems can address them.

Identifying gaps in healthcare: a qualitative study of Ukrainian refugee experiences in the German system, uncovering differences, information and support needs.

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. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00030942, date of registration: 29.12.2022.

Unravelling moderated mediating effects of loss aversion, information avoidance and self-efficacy on cancer fear and cancer screening.

BACKGROUND: Cancer health campaigns provide information to drive early detection. OBJECTIVE: To examine the effect of cancer fear on cancer screening focusing on the mediating role of loss aversion, a concept derived from prospect theory. We hypothesize that fear initiates negative beliefs that cancer can cause the loss of way of life leading to information avoidance, and indirectly influences cancer screening intentions. This theoretical model is conditional, in that one's degree of self-efficacy moderates cancer screening intentions. METHODS: A cross-sectional sample (N = 371), aged 35 to 70, recruited via an online panel. Participants completed a questionnaire containing demographic and examined variables. Using conditional process, we tested the proposed theoretical framework. RESULTS: Cancer fear was positively associated with cancer screening, and an indirect path was found where loss aversion and information avoidance negatively mediated the relationship. Self-efficacy was found to significantly moderate information avoidance and cancer screening intentions. Among those who reported high information avoidance, less self-efficacious individuals had lower cancer screening intentions compared to those more self-efficacious. CONCLUSION: We confirm extant literature that negative views of cancer lead to loss aversion and information avoidance. Using prospect theory can help make messaging for cancer screening more effective.

The information needs of relatives of childhood cancer patients and survivors: A systematic review of quantitative evidence.

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. CONCLUSION: 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. PRACTICE IMPLICATIONS: 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.

Information needs of caregivers of adults with intellectual and/or developmental disabilities in India.

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.

Health information and resources in hospital outpatient waiting areas may not meet the needs of older adults from culturally and linguistically diverse backgrounds: A cross-cultural qualitative study.

BACKGROUND: Health information and resources are often provided in hospital outpatient waiting areas but may not meet the cultural and health literacy needs of older adults from culturally and linguistically diverse (CALD) backgrounds. OBJECTIVES: To explore the perspectives and experiences of Cantonese- and Vietnamese-speaking patients and carers in this setting. METHODS: This qualitative interview-based study was conducted from December 2019 to March 2020 at a single outpatient rehabilitation service located at a tertiary public hospital. Four adult consumers (two older adult patients, two caregivers) from CALD backgrounds participated in semi-structured interviews with bilingual researchers. Data were transcribed, translated and analysed using reflexive thematic analysis. RESULTS: Five themes were developed which highlighted that older adults' language profiles shaped their health information needs and ability to access resources in waiting areas. Cultural factors such as filial responsibility may also influence health information preferences. DISCUSSION: Older consumers from CALD backgrounds did not have equitable access to health information and resources in the waiting area compared with English-literate older adults. CONCLUSION: Health information and resources in waiting areas warrant improving to better meet the needs of older patients from CALD backgrounds and their caregivers.

Assessing patient information needs for new antidiabetic medications to inform shared decision-making: A best-worst scaling experiment in China.

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. OBJECTIVES: 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. PATIENT OR PUBLIC CONTRIBUTION: Before data collection, a pilot survey was carried out among diabetic patients to provide feedback on the acceptability and intelligibility of the attributes.

Sexual and reproductive health information needs; an inquiry from the lens of in-school adolescents in Ebonyi State, Southeast Nigeria.

BACKGROUND: It is important to understand the sexual and reproductive health (SRH) needs of adolescents from the adolescents themselves to address their needs properly. Hence, this paper provides new knowledge on the information needs on SRH among adolescent boys and girls in selected secondary schools in Ebonyi state, southeast Nigeria. METHOD: A comparative assessment was conducted among adolescent boys and girls in public secondary schools that received a specific school-based SRH intervention (group A) and those that did not receive the intervention (group B). These schools were spread across six urban and rural local government areas in Ebonyi state, southeast Nigeria. A structured interviewer-administered questionnaire was used to collect data from 514 adolescents aged 13 to 18 on their stated needs for SRH information and services. Categorical variables were compared using the Chi-square test, and predictors were determined using logistic regression analysis. The statistical significance was determined at p < 0.05. RESULT: Majority of the adolescents (82% of intervention group and 92% of non-intervention group) identified puberty and pubertal changes as perceived SRH information need for adolescents (χ2 = 7.94; p-value = 0.01). Adolescents who received SRH intervention have 3.13 (p < 0.001) times the odds of perceiving the need for adolescents to be provided with SRH information than adolescents who did not receive SRH intervention. The odds of perceiving the need for adolescents to be provided with SRH information for adolescents who reside in urban communities are 0.31 (p < 0.001) times the odds for adolescents who resides in rural communities. That is, the perception odds are higher adolescents who reside in rural communities. Multivariate regression of specific SRH information showed the location of residence as a strong predictor of adolescents' perceived need for information on 'puberty and pubertal changes' (OR = 0.30; p = 0.001), 'safe sex and sexual relations' (OR = 0.33; p < 0.001) and 'prevention of pregnancy and use of contraceptives' (OR = 0.28; p < 0.001). Adolescents in senior secondary school have 2.21 (p = 0.002) times the odds of perceiving the need for adolescents to be provided with specific SRH information than adolescents who are in junior secondary school. CONCLUSION: Adolescents' age, location of residence, and study group were found to be strong predictors of SRH information needs. This suggests the need for in-school adolescents to be provided with substantial and continuous SRH information for healthy living and making informed SRH choices. In developing SRH interventions that will achieve optimal effectiveness in the lives of adolescents in school, different demographic factors should be considered for context-specific and appropriate strategies.

Information and communication priorities of patients and healthcare professionals in shared decision making regarding adjuvant systemic breast cancer treatment: A survey study.

PURPOSE: To assess information and communication priorities of patients and healthcare professionals in Shared Decision Making about adjuvant systemic treatment of primary breast cancer and identify key decision-relevant information accordingly. METHODS: Patients (N = 122) and professionals working with breast cancer patients (N = 118), of whom 38 were nurse practitioners and 32 nurses, were recruited using convenience sampling, and surveyed about information/communication aspects key to decision-making, using ranking assignments. We further posed a simple open question, questions about receiving population-based statistics versus personalized statistics concerning treatment outcomes, and their attitude and experience concerning Shared Decision Making. Data were analyzed using descriptive analysis and a qualitative analysis. RESULTS: Both patients and professionals prioritized information about treatment outcomes (i.e., survival, recurrence) as key decision-relevant information for patients. Patients prioritized information about relatively severe treatment side-effects and late effects (e.g., blood clot, stroke), whilst professionals prioritized information about effects that occur relatively often (e.g., hair loss, fatigue). Patients specifically wanted to know if the benefit of treatment is worth the negative impact. Both groups prioritized personalized statistics over population-based statistics. CONCLUSIONS: Some differences between patients and professionals were found in information and communication priorities, specifically related to the different side-effects. It seems worthwhile to precisely address these side-effects in Shared Decision Making concerning adjuvant systemic treatment. Furthermore, it seems important to deliberate together on the question if expected benefit of treatment is worth the potential negative impact for the individual patient.

Advanced Practice Nursing and CAR-T Cell Therapy: Opportunities, Challenges and Future Directions.

OBJECTIVES: Chimeric antigen receptor (CAR)-T cell therapy is a new treatment for patients with myeloma and other B cell malignancies where advanced practice nurses (APN) can make a great contribution. The aim of this review is to identify key aspects of current literature relevant to APNs working with this population. METHODS: Discussion of selected peer-reviewed literature and best practice guidelines found through electronic database searches (CINAHL, MEDLINE). RESULTS: Although few APN roles in CAR-T cell therapy have been published to date, recent research suggests that the APN is central to the care of these patients. They are essential for continuity of care and navigation through the treatment process, providing an important and consistent point of contact for patients' and carers' anxieties and uncertainties. APNs play a central role in symptom management, as they constantly incorporate new experience and scientific findings into the refinement of existing protocols. The continuum of care extends far beyond the inpatient stay and addresses symptoms that may persist long after cytokine release syndrome and neurotoxicity have resolved. The APN may therefore make a relevant contribution to patients' health-related quality of life, given its likely correlation with the dynamics and intensity of treatment-related symptoms. The APN also takes on a leadership role in the treatment team. CONCLUSIONS: APNs use all core competencies to sustainably support and empower patients and caregivers. This is achieved through counseling and education, in addition to identifying, developing, and implementing evidence-based symptom management. They play pivotal roles in introducing new CAR-T cell products, educating teams, and advancing their role through APN networks. Finally, APNs are integral members of multiprofessional teams, supporting colleagues in ethically challenging patient situations. IMPLICATIONS FOR NURSING PRACTICE: APNs in the field of CAR-T cell therapy make an important contribution to the continuous care of patients, caregivers, and treatment teams.

Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study.

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.

Exploring the learning preferences of farmworker-serving community health workers.

Community health workers are responsible for finding, processing, and transferring health information to communities with limited access to health-related resources, including farmworkers. This paper is the culmination of an undergraduate student research project to explore the learning processes and preferences of farmworker-serving community health workers in the USA. The project was designed for students from farmworker or agricultural backgrounds at two North Carolina universities and was supported by a North Carolina Department of Health and Human Services workforce development grant. Semi-structured interviews were conducted, in person and virtually, with a convenience sample of 17 current and former community health workers. The interview data were analysed thematically and identified a preference for a combination of learning styles, with visual and hands-on learning being the most preferred. Community health workers also identified the importance of learning preferences in relation to their responsibilities as health educators. This study provides librarians, along with public health and medical professionals, with useful information about learning preferences to inform the creation of new and varied learning materials for community health workers.

Challenges in Obtaining and Seeking Information Among Breast Cancer Survivors in an Asian Country: a Qualitative Study.

Breast cancer survivors on adjuvant endocrine therapy (AET) have distinct information-seeking experience compared to those in the diagnosis and intensive treatment phase. This study aimed to understand the challenges in obtaining and seeking information among Malaysian breast cancer survivors. We conducted semi-structured, one-to-one interviews among patients using AET from two hospitals and a local cancer organization. Interviews were conducted until theme saturation was achieved (N = 25). Interviews were de-identified, transcribed verbatim, and analysed using thematic analysis. To ensure rigor, coding was conducted through regular discussions between two researchers and the findings were shared with several participants after analysis was completed. Three main themes were identified: limitations in the healthcare system, pitfalls of seeking information online, and limited information from local sources. The participants perceived that their information needs were not met by their healthcare providers and sought information on the Internet to complement their information needs. However, they were faced with risks of misinformation, information overload, and unethical promotion of health products. Those with limited English proficiency had difficulties in accessing quality information, and suggested that there should be more content created by local health advocates in local languages, with information that is tailored for local cultures. As the Internet has become an important medium of health education, healthcare providers and patients should be equipped with the skills to share and search for information online. Digital health literacy needs to be incorporated in patient education modules to create a more informed and empowered patient community.

Experiences with health information among caregivers of people with cancer from culturally and linguistically diverse backgrounds: A qualitative study.

OBJECTIVES: Although some research suggests that caregivers from culturally and linguistically diverse (CALD) communities have higher unmet information needs compared to their English-speaking counterparts, few studies have examined determinants of information needs among CALD cancer caregivers and their satisfaction with received information. This study aimed to explore experiences with cancer-related information among caregivers of people with cancer from CALD communities. METHODS: Semi-structured interviews were conducted with 24 caregivers from Arabic and Chinese backgrounds (12 in each group). Thematic analysis was used to analyze data. RESULTS: Participants' mean age was 40.6 years, and most were female (83%). Six themes were identified: (a) lack of information to meet their needs; (b) challenges understanding cancer- and care-related information; (c) proactivity to make sense of, and understand information; (d) interpreting information: the role formal and informal services; and (e) engaging with health providers to access information. CONCLUSIONS: Caregivers identified significant language and communication barriers impacting their capacity to understand cancer-related information given by providers and they invested personal effort clarifying information. The importance of access to formal interpreter services, even when caregivers and care recipients seem proficient in English, was highlighted. Cultural sensitivity of providers when discussing a cancer diagnosis and treatment was also identified as an important consideration. SIGNIFICANCE OF RESULTS: Culturally tailored outreach programs designed to provide key cancer-related information which are accessible to CALD caregivers have the potential to improve the health outcomes of both caregivers and care recipients.

Parents' information needs during the first year at home with their very premature born child; a qualitative study.

Objective: To obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant. Methods: We conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews were audiotaped and transcribed verbatim. Inductive thematic analysis was performed by two independent coders. Results: Ten participants were interviewed and had various and changing information needs during the developmental trajectory of their infant. Three main themes emerged; (1) Help me understand and cope, (2) Be fully responsible for my baby, and (3) Teach me to do it myself. Available and used sources, such as the Internet, did not meet their information needs. Participants preferred their available and knowledgeable healthcare professionals for reassurance, tailored information, and practical guidance. Conclusion: This study identified parents' information needs during the first year at home with their VP infant and uncovered underlying re-appearing needs to gain confidence in child-caring abilities and autonomy in decision-making about their infants' care. Innovation: This study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.