BACKGROUND: Hepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined.
OBJECTIVE: This pilot study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm.
METHODS: Patients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed.
RESULTS: Twenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term \'palliative care\'.
CONCLUSIONS: There is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.

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BACKGROUND: Persons who speak languages other than English are underrepresented in clinical trials, likely in part because of inadequate multilevel resources. We conducted a survey of institutions affiliated with the Children\'s Oncology Group (COG) to characterize current research recruitment practices and resources regarding translation and interpretation services.
METHODS: In October 2022, a 20-item survey was distributed electronically to institutions affiliated with COG to assess consent practices and resources for recruiting participants who speak languages other than English to COG trials. Descriptive statistics were used to summarize responses; responses were compared by institution size and type as well as respondent role.
RESULTS: The survey was sent to 230 institutions, and the response rate was 60% (n = 139). In total, 60% (n = 83) of those respondents had access to short-form consent forms. Full consent form translation was required at 50% of institutions, and 12% of institutional review boards restricted use of centrally translated consent forms. Forty-six percent (n = 64) of institutions reported insufficient funding to support translation costs; 19% (n = 26) had access to no-cost translation services. Forty-four percent (n = 61) were required to use in-person interpreters for consent discussions; the most frequently cited barrier (56%) to obtaining consent was lack of available in-person interpreters. Forty-seven percent (n = 65) reported that recruiting persons who speak languages other than English to clinical trials was somewhat or very difficult.
CONCLUSIONS: Institutions affiliated with COG face resource-specific challenges that impede recruitment of participants who speak languages other than English for clinical trials. These findings indicate an urgent need to identify strategies aimed at reducing recruitment barriers to ensure equitable access to clinical trials.

BACKGROUND: Community interpreters (CIPs) play a crucial role in various community services, including healthcare, when service providers and users do not share a common language. However, there is a lack of evidence-based data on this population globally. This explorative cross-sectional study aims to gain a better understanding of CIPs and their work in Germany.
METHODS: A nationwide online survey was conducted among CIPs in Germany to collect data on their qualification background, working conditions, mental health, interpreting-related psychosocial distress and sociodemographics. Participants were recruited through interpreting pools, training institutions and migrant organizations. Data were analyzed descriptively, dependent t-test, multiple logistic and hierarchical stepwise regression analyses were performed to predict participation in interpreting-specific training, interpreting competence and interpreting-related psychosocial distress.
RESULTS: Across all 16 federal states, N = 873 responses were used for analysis. Most participants are female (74%), born abroad (77%) and have a high level of education (69%). The vast majority interpret occasionally in their leisure time (44%) and are self-employed/freelance (51%). 34% interpret solely or additional on a voluntary basis (unpaid). The median hours of interpreting per month are 10 h, 75% do not exceed 30 h. On average interpreters work in four different settings. 69% attended any kind of interpreting training with a median of 25 h in total. Interpreting in more settings emerged as an associated factor with participation in training. Of those who have never attended any training, 69% consider themselves as rather/very competent in interpreting. Interpreting more frequently, having less severe anxiety symptoms, getting higher and more often paid and being less satisfied with the payment is associated with self-reported interpreting competence. In total, 36% reported moderate or severe psychosocial distress regarding interpreting. Higher general psychosocial distress and depressive symptoms, higher interpreting frequency and lower payment satisfaction were found to be associated with higher distress regarding interpreting. Additionally, factors such as precarious work conditions, lack of recognition and discrimination (e.g. racism and sexism) were reported as distressing.
CONCLUSIONS: This study provides a first comprehensive evidence-based national database on CIPs in Germany. The findings can be valuable for the development of qualifications, guidelines, policies and the process of professionalizing the field of CIPs.

BACKGROUND: As the U.S. population ages, family members increasingly act as informal caregivers, particularly for minority patients and those with limited English proficiency (LEP). However, physicians often do not identify or engage caregivers until there is a health crisis. This study aims to further our understanding of characteristics associated with having a caregiver present at a primary care visit, and better understand the specific roles family caregivers engage in to support older Chinese and Latino primary care patients.
METHODS: Primary care patients were surveyed by telephone in a study of language access and communication. Participants included Chinese and Latino primary care patients (≥ 65 years old) from an academic general medicine practice. We asked patients if anyone was in the room with them during their most recent primary care visit (yes = caregiver accompanied). We asked about caregiving support for various needs, and examined associations of patient and visit characteristics with being accompanied, and frequency of caregiver support roles overall and by caregiver accompaniment.
RESULTS: Among 906 participants, 80% preferred a non-English language, 64% were women, 88% had Medicare, and mean age was 76 years (range 65-97). 43% were accompanied to their most recent visit. Speaking English \'not at all\' vs. \'very well\' was associated with being caregiver accompanied (OR 3.5; 95% CI 1.3-9.7), as was older age ≥ 75 vs. 65-74 (OR 2.7; 95% CI 2.0-3.7). The most common roles being supported by caregivers included: transportation to medical appointments (63%), helping with medical decisions (60%), and talking with the doctor about the patient\'s medical care (54%). Even among unaccompanied patients, substantial proportions reported caregiver support with medical decisions (45%), talking with the doctor (33%), and medical needs at home (26%).
CONCLUSIONS: Opportunities for physicians to engage caregivers who have active support roles may be missed, especially if those caregivers are not present at the visit. Future interventions should aim to help physicians identify which patients have caregivers and for what needs, so they may effectively engage caregivers before a health crisis occurs.

BACKGROUND: Autistic people are more likely to experience stigma, communication barriers and anxiety during healthcare. Autism Health Passports (AHPs) are a communication tool that aim to provide information about healthcare needs in a standardised way. They are recommended in research and policy to improve healthcare quality.
OBJECTIVE: To explore views and experiences of AHPs among Autistic people from the UK who have been pregnant.
METHODS: We developed an online survey using a combination of open and closed questions focused on healthcare impairments and views and experiences of AHPs. Data were anlaysed using descriptive statistics, Kruskal-Wallis tests, and content analysis.
RESULTS: Of 193 Autistic respondents (54% diagnosed, 22% undergoing diagnosis and 24% self-identifying), over 80% reported anxiety and masking during healthcare always or most of the time. Some significant differences were identified in healthcare (in)accessibility by diagnostic status. Only 4% of participants knew a lot about AHPs, with 1.5% of participants using one at least half of the time. Almost three quarters of respondents had not previously seen an AHP. Open text responses indicated that the biggest barrier to using an AHP was a belief that health professionals would discriminate against Autistic patients. Additional barriers included staff lack of familiarity with AHPs and respondents expecting a negative response to producing an AHP.
CONCLUSIONS: Our findings suggest that AHPs are not reducing health inequalities for Autistic adults who have been pregnant. Alternative solutions are needed to reduce health inequalities for Autistic people.

OBJECTIVE: The purpose of this study was to explore pediatric physical therapists\' (PTs\') experiences including successes, challenges, and barriers with cross-cultural communication with Arabic-speaking Middle Eastern children and their families who require interpreter services.
METHODS: Eight PTs consented to participate in qualitative dyadic interviews. Transcription and interviews were conducted virtually in Microsoft Teams. Quality criteria included member checking for validity and trustworthiness and bracketing to minimize investigator bias. Inductive thematic analysis was used to identify meaning units and major themes.
RESULTS: The 6 themes that emerged were: fostering therapeutic relationships, practicing culturally sensitive care, communicating intentionally, experiencing successes, recognizing challenges, and tailoring a physical therapy plan of care. Representative quotations support each theme.
CONCLUSIONS: Therapists perceive their experiences with Arabic-speaking children, families, and interpreters positively despite challenges related to cultural and language barriers. In sharing their experiences, therapists demonstrated self-reflection, openness to learning, and desire to build strong therapeutic alliances.

BACKGROUND: Rising admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) have increased the number of non-English-speaking individuals who may wish to participate in research studies. However, a lack of appropriately translated research study materials may limit the opportunity for these families to be involved in research that could impact the care that infants and families receive in the NICU.
OBJECTIVE: The primary purpose was to pilot test study materials that were transcreated from English to Spanish with the assistance of a bilingual community advisory board with Spanish-speaking parents of NICU infants.
METHODS: A total of 19 Spanish-speaking parents (15 mothers and 4 fathers) who were representative of the population of interest completed paper-and-pencil surveys, along with a cognitive interview. Preliminary data related to decision-making and goals of care, infant symptoms, and their experiences in the NICU were also collected.
RESULTS: The internal reliability of the transcreated study instruments ranged from good to excellent (α= 0.82-0.99). Participants reported that study materials were not offensive and did not make them feel uncomfortable; however, they found some words/phrases to be confusing. Parents had the opportunity to provide suggested wording changes.
CONCLUSIONS: Language barriers and a lack of cultural responsiveness can affect the care that infants and their families receive. More accurate and culturally appropriate transcreation of study materials can remove barriers to research participation and facilitate better communication with non-English-speaking families, which may lead to the development of better-informed evidence-based interventions and clinical practices in the NICU.

OBJECTIVE: ACTION Teens (NCT05013359) was conducted in 10 countries to identify perceptions, attitudes, behaviors, and barriers to effective obesity care among adolescents living with obesity (ALwO), caregivers of ALwO, and healthcare professionals (HCPs). Here, we report data from participants in Italy.
METHODS: The ACTION Teens cross-sectional online survey was completed by 649 ALwO (aged 12- < 18 years), 455 caregivers, and 252 HCPs in Italy in 2021.
RESULTS: Most ALwO thought their weight was above normal (69%), worried about weight affecting their future health (87%), and reported making a weight-loss attempt in the past year (60%); fewer caregivers responded similarly regarding their child (46%, 72%, and 33%, respectively). In addition, 49% of caregivers believed their child would lose excess weight with age. ALwO (38%) and caregivers (30%) most often selected wanting to be more fit/in better shape as a weight-loss motivator for ALwO; HCPs most often selected improved social life/popularity (73%). ALwO (25%) and caregivers (22%) most frequently selected lack of hunger control and not liking exercise, respectively, as weight-loss barriers, while HCPs most often agreed that unhealthy eating habits were a barrier (93%). ALwO most often obtained weight-management information from family/friends (25%) and search engines (24%); caregivers most often obtained information from doctors (29%).
CONCLUSIONS: In Italy, the impact of obesity on ALwO was underestimated by caregivers, and ALwO and HCPs had different perceptions of key weight-loss motivators and barriers. Additionally, the internet was a key information source for ALwO, which suggests new education/communication strategies are needed.
METHODS: IV; Evidence obtained from multiple time series with/without intervention, e.g.
METHODS:
BACKGROUND: ClinicalTrials.gov, NCT05013359.

BACKGROUND: The ongoing global migration has led to multicultural societies, with many migrants who do not speak the official language in the host country. This could contribute to communication problems with staff in healthcare and a risk to patient safety. Research on patient safety in medication use in migrants is an under-researched area. The aim was to explore diverse foreign-born people\'s experiences and perceptions of self-management of medication and determine if home-based practice patterns have implications on medication safety, and what factors may support safe medication use.
METHODS: A qualitative explorative study, with individual semi-structured interviews and participant observations in the patients\' home. Qualitative content analysis was applied.
RESULTS: A purposeful sample of 15 foreign-born persons identified by healthcare staff as having language difficulties in Swedish that may pose a safety risk in connection with medication use at home, was selected. Three categories were identified. The first category showed respondents being dependent on another person, having experiences of not receiving information about their medications due to language barriers, having difficulties getting access to the healthcare centre and feeling distrusted/misunderstood. The second category showed respondents being independent and self-motivated Although they struggled, they managed to get access/contact with the healthcare centre themselves and felt understood/listened to by the staff. The last category concerned factors that facilitating medication use; such as having a medication list in the respondents\' own language and offering a choice of language on the answering machine at the healthcare centre. Although they knew it was impossible to get an interpreter at the pharmacy, they felt safe knowing there was always a solution for receiving understandable information.
CONCLUSIONS: The findings highlighted that language barriers can complicate the communication between migrants and the healthcare, which can affect the medication safety. Understanding of this group is essential to improve the cooperation between patients and staff, leading to culturally congruent care. This knowledge should be used in healthcare to understand the gap in communication to increase patient safety. Further research from other angles, e.g. pharmacy/healthcare staff and relatives is needed to identify and evaluate facilitation to improve the outcome of the intended medication treatment.