BACKGROUND: Relative to country-specific epidemiological trends, Kuwait experiences a far greater burden of type 2 diabetes among its population. Information behaviours form a significant component of self-care management for patients diagnosed with type 2 diabetes, however this remains an understudied aspect of disease management. This study aims to investigate the information behaviours of patients with type 2 diabetes in Kuwait, and characterise the methods employed to manage their disease.
METHODS: This qualitative study employed a grounded theory method. Semi-structured interviews were conducted with twenty-seven participants over three phases of data collection in primary, secondary and tertiary healthcare settings across Kuwait. These were complemented by in-depth interviews to detail the information behaviours of these participants. The interviews were translated where appropriate, transcripts, and analysed through qualitative coding to synthesise the information behaviour patterns.
RESULTS: The findings demonstrated that living with type 2 diabetes involved a range of developmental and transformative stages, including changes to the patients\' emotional state, reconstruction of their lifestyle and identity, and changes in the ways they find and use information. Living with the chronic condition was viewed as a dynamic and transitional process, where patients\' information behaviours continually changed throughout the process across various identifiable stages. This dynamic pattern was reflected most prominently across the participants\' behavioural needs, sources and information-seeking patterns.
CONCLUSIONS: Patients with type 2 diabetes continuously adapted their information behaviours to optimise the self-management of their condition across a relatively predictable pattern. Greater understanding of these behaviours across a wider population would improve the provision of clinical care for patients with diabetes.

This focus group study explored the needs, preferences and beliefs of adults with seasonal allergic rhinitis regarding their self-management practices, and related information use and needs. Four focus groups were held, two online and two on location. The 20 participants (11 women); Mage = 39.0 years (range: 21-56 years) were reluctant to identify themselves as patients, trivializing their complaints while avoiding being confronted too much with their condition. Participants often expressed low trust in the effectiveness of medication and the ability of healthcare to alleviate their complaints. This resulted in relatively low openness to information such as personalized pollen predictions. Findings were synthesized under three interrelated themes: \'Being ill, but not a patient: it\'s bad, but you learn to live with it\', \'Individual search for what does or doesn\'t work\' and \'Information needs and sources\'. Implications for communication supportive of self-management practices for seasonal allergic rhinitis are discussed.

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.

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.

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: 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.

OBJECTIVE: 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.

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.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs\' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals.
OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find.
METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team.
RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations.
CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.