This study aimed to explore the end-of-life decision-making experiences of bereaved family caregivers of Alzheimer’s disease (AD) patients, focusing on do-not-resuscitate orders. Given the high emotional and ethical burden on caregivers, understanding their challenges and needs is crucial to enhancing palliative care for AD patients.

A qualitative, exploratory study was conducted using semi-structured interviews with 22 family caregivers recruited through purposive sampling in central Taiwan. Participants were primary caregivers for AD patients who had been bedridden for at least a year before death. Analysis employed inductive thematic coding to identify key themes, with rigor ensured through multiple coding, member checking, and reflective journaling.

Three major themes emerged: (1) Decision-making difficulties, where caregivers felt pressure and conflict when making urgent decisions; (2) Willingness to let go, which involved accepting the inevitability of death when recovery was no longer possible; and (3) Embracing the consequences of the decision, reflecting caregivers’ sense of relief and acceptance post-decision. Cultural factors, such as filial piety, were found to influence decision-making processes, often intensifying emotional conflicts.

Findings underscore the importance of early, culturally sensitive discussions around end-of-life care in palliative settings for AD patients. Healthcare providers are encouraged to initiate these discussions, offering clear explanations and emotional support to assist caregivers through decision-making. This study highlights the need for a family-centered approach that respects cultural nuances, helping to reduce caregiver stress and enhance the quality of palliative care in AD contexts.

Left ventricular assist devices are increasingly used in paediatric patients with end-stage heart failure. Although they improve survival and functional capacity, serious complications can occur.

We report an 11-year-old girl with dilated cardiomyopathy supported by a left ventricular assist device (HeartMate 3) as a bridge to transplant. Despite periodic education about the use of a left ventricular assist device, she entered the sea, leading to driveline and battery seawater exposure. She presented with device alarms but was initially stable. Given the risk of corrosion, emergent battery and lead replacement were performed under intensive monitoring with inotropic support. She experienced transient hypotension during left ventricular assist device cessation but recovered uneventfully.

This is the first paediatric case describing left ventricular assist device seawater exposure. The case highlights the importance of repeated education, psychological support, and preparedness for high-risk interventions. This case also underlines potential infectious and corrosive risks following seawater exposure.

To determine associations between spiritual well-being (faith and meaning dimensions) with emotional suffering (anxiety, depression, hopelessness, and quality of life) in Latinos with advanced cancer and examine themes of existential coping.

In a mixed-methods study, participants were recruited from cancer clinics in New York and Puerto Rico. Measures included the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being Scale, the Hospital Anxiety and Depression Scale, and the Beck Hopelessness Scale. A subset of participants completed in-depth semi-structured interviews exploring the roles of existential and religious factors in adjustment to cancer. Correlations were conducted, and the interviews were analyzed with a thematic analysis approach.

A sample of 142 Latinos with advanced cancer participated (67.6% stage IV and 32.4% stage III). The spiritual well-being, faith and meaning factor were associated with anxiety and depression symptoms. Meaning was associated with lower hopelessness and showed stronger associations with emotional suffering than the faith dimension. Lower acculturation was associated with higher hopelessness but not with depression/anxiety. In semi-structured interviews (n = 24), recurrent themes were: (1) receiving existential support from counselors; (2) receiving spiritual support from family and/or friends; (3) focusing on being spiritual and finding purpose rather than on a specific religion or faith; (4) religious coping; and (5) spiritual coping, focused on self-growth, finding meaning, and helping others to cope. Patients identified sources of meaning, including helping others, having a fighting spirit, a spirit of learning, enjoying work, enjoying life, family and children, confidence in providers/treatment, God/faith, and spirituality.

Meaning had a more significant influence than faith on emotional suffering. Participants emphasized the importance of finding meaning and purpose, self-growth, and helping others as ways to cope with an advanced diagnosis. Interventions with a meaning-making approach, emphasizing finding purpose and growth, are needed for Latinos with advanced cancer.

To describe and assess the overall results of the La Caixa Foundation and the ICO/UVIC Chair of Palliative Care (Former WHO Collaborating Centre) Program “Comprehensive Care of People with Advanced Chronic Conditions” at 15 years (2008–2023).

We used qualitative and quantitative methods, such as prospective, quasi-experimental, and pre-post test designs, to evaluate the effectiveness of the interventions led by psychosocial teams providing support to existing healthcare services. Data were collected from the Program’s unique shared online information system, retrieving output and outcomes information, including data obtained from validated psychosocial evaluation instruments and semi-structured interviews with patients, relatives, professionals and other stakeholders, focusing on effectiveness, satisfaction, and perceived quality of different aspects of the Program, as well as outputs.

From 2008 to 2022, the Program implemented 65 teams in Spain and 11 in Portugal across all the provinces, with 379 full-time professionals. They saw 286,644 patients and 371,023 relatives, with a median intervention duration of 2.3 weeks. Patients’ mean (SD) age was 73.2 (14.9) years; 52.3% were women, and most had a cancer diagnosis (60.1%). After 3 consecutive interventions, patients showed significantly improved psychosocial parameters, according to the Assessment of PSS Needs (ENP-E) and Existential Loneliness Detection Scale (EDSOL). Patients, relatives, and stakeholders were highly satisfied. The Program has developed a Master’s degree that has trained over 250 professionals and conducted 371 courses/workshops and 302 lectures. The Program developed tools, manuals, and protocols that were published, available, and common to all professionals involved. It also developed innovative approaches responding to special settings and needs.

A care program within a collaborative framework between public health services and non-profit foundations is an effective, efficient, and feasible model for organizing the psychosocial and spiritual dimension of care for patients with advanced chronic conditions and their relatives.

Kinesiophobia is defined as an excessive and irrational fear of movement and physical activity. Individuals living with Parkinson’s disease (PD) can be at risk of developing this phobia, due to the debilitating nature of the disease’s motor symptoms such as impaired balance, bradykinesia, rigidity and tremor. This is particularly problematic, as exercise is crucial for people with PD, especially considering its potential to slow down disease progression. The Tampa Scale of Kinesiophobia for Parkinson’s disease (TSK-PD) is a valid and reliable instrument for measuring kinesiophobia in PD. However, no French translation of this scale existed prior to this study.

The English TSK-PD was translated, cross-culturally adapted into Canadian French, and administered to 102 ambulatory French-speaking Canadians living with PD, aged 46–83. Statistical analyses were then conducted to examine the psychometric properties of the translated scale.

Results confirmed the construct validity of the translated version and revealed high internal consistency (Cronbach’s alpha = 0.90), good test-retest reliability (ICC = 0.84), with no evidence of floor or ceiling effects. Exploratory and confirmatory factor analyses supported a two-factor structure consisting of “Activity Avoidance” and “Harm.”

The French-Canadian TSK-PD can be recommended for use in research and in clinical settings to better identify fear of movement in French-speaking PD patients and promote physical activity.

New technologies are being developed in a context of scarcity. Health technology assessment (HTA) aims to support decision makers in providing equitable and affordable access to effective innovations. This study aims to summarize the policy-related findings of a Horizon2020 project on innovating HTA methods and discuss their implications for the governance of HTA in Europe.

A thematic analysis of policy-oriented papers (n = 18) from the Next Generation Health Technology Assessment (HTx) project was carried out to summarize challenges and solutions. Subsequently, via an online survey and in a 2-day meeting, European and global stakeholders (n = 21) were invited to comment on these solutions and to prioritize future strategies.

Reported challenges included a lack of access to standardized data, differences in evidentiary needs, existing policy structures, and a lack of capacity and knowledge. Suggested solutions were capacity building, national and international dialogues, standardization, and increased European collaboration. Stakeholders had different expectations with respect to the likely success of these solutions.

Innovation of HTA requires alignment of evidentiary needs through dialogues, standardization through increased European collaboration, and capacity building. However, without additional investments in personnel capacity, HTA agencies must still prioritize some activities at the expense of others. Furthermore, although European collaboration is important, global alignment might be required to enforce standardization.

This study analyses the relationship between fear of stigma and bypassing primary ART facilities by ART clients in the Upper East Region of Ghana.

Methodology: The study employed an exploratory case study design, involving 52 participants of: ART clients (n = 37), nurses (n = 7), a counsellor (n = 1), cadres (n = 2), pharmacists (n = 2) and data managers (n = 3) through convenient and purposive sampling techniques. Data was collected using semi-structured interview guides and analysed using a thematic framework.

The study provides ample evidence of the occurrence of stigma-driven bypassing of primary ART facilities by clients. The analysis shows entrenched cultural norms and values and the population’s low awareness of the efficacy of ART fuel the processes of stigma and discrimination towards ART clients.

We acknowledge the following limitations and strengths: convenient and purposive sampling procedures may not represent the views of all ART clients on bypassing primary facilities. Sensitive nature of HIV and the location of ART centres, coupled with time constraints in probing into all ART bypassing issues. Yet, given the depth of the issues presented and the scope of participants and ART facilities, we believe relevant data was generated to address the research question.

An integrated approach could be used to address the drivers of stigma and discrimination focusing on awareness creation to undo the entrenched negative cultural beliefs around HIV transmission, and implement anti-HIV stigma legislation to eliminate prejudice towards PLHIV.

Neurodevelopmental disorders have been associated with hearing problems (HP) later in life, but there is limited information regarding their shared biology.

We leveraged large-scale genome-wide datasets to estimate genetic correlation (global and local), polygenic overlap, and locus-specific pleiotropy among HP, autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), and Tourette syndrome (TS). Then, we investigated shared molecular functions, biological processes, and cellular components, and performed a drug-repurposing analysis to identify compounds that may target the pathogenic processes linking neurodevelopmental disorders to HP.

We observed high genetic correlation of HP with ASD (rg = 0.22) and TS (rg = 0.22). With respect to HP-ADHD polygenic overlap, 34% of the causal variants were shared between these conditions, with only 74% of them showing concordant effect directions. We also identified nine chromosomal regions with evidence of ADHD-HP local genetic correlations with pleiotropic effects on other outcomes, such as smoking initiation, brain-imaging phenotypes, and bilirubin levels. With respect to HP-ASD, we observed an inverse local genetic correlation within CD33 chromosomal region. Pleiotropy among HP, ASD, and ADHD was also identified in two variants (rs325485 and rs2207286) included within 95% credible sets related to neuropsychiatric conditions, altered hearing function, and other traits such as risk taking and insomnia. Drug-repurposing analyses identified anisomycin for HP-ASD shared biological mechanisms and five compounds related to HP-ADHD pleiotropy.

Our findings provide evidence that the comorbidity between neurodevelopmental disorders and HP is at least partially due to shared pathogenic processes acting through intrinsic and extrinsic factors.