A qualitative study of bereaved parents and healthcare professionals on perinatal loss.

Introduction: Perinatal loss, encompassing stillbirth and neonatal death, can have profound physical and psychological consequences for parents. Effective communication by healthcare professionals during this sensitive period is critical. This study aimed to explore how bereaved parents and professionals experienced verbal and non-verbal communication during perinatal loss.

The Support Needs of Patients Requesting Medical Aid in Dying and Their Relatives: A Qualitative Study Using Semi-Structured Interviews and Written Narratives.

Objectives: To explore the support needs that patients and relatives experience throughout their medical aid in dying (MAID) trajectories.

Methods: A qualitative study in Belgium in 2022 using 1) semi-structured interviews with and personal written narratives of patients requesting MAID and 2) semi-structured interviews with relatives of patients requesting MAID. We performed a qualitative content analysis.

Challenges and facilitators to perinatal mental healthcare among first-generation migrant women: A qualitative ethnographic study in Flanders, Belgium.

Introduction: Women with a migration background face significant barriers to accessing perinatal mental health support. This study aims to explore the needs, barriers and facilitators regarding perinatal mental health support in women with a first-generation migration background and how they experience support within their own community.

Methods: We conducted qualitative in-depth face-to-face interviews with mothers who gave birth within 12 months preceding the interview, recruited from an Antwerp maternity ward between August and September 2022.

Implementation and evaluation of a navigation program for people with cancer in old age and their family caregivers: study protocol for the EU NAVIGATE International Pragmatic Randomized Controlled Trial.

Background: Cancer navigation programs aim to support, educate, and empower patients and families, addressing barriers to diagnostics, treatment, and care. Navigators engage with people to ensure timely access to services and resources. While promising for older people with cancer, these programs are scarce in Europe, and research on their effectiveness and implementation is limited.

Mixed methods process evaluation of an advance care planning intervention among nursing home staff.

Background: We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff's self-efficacy, it did not change their knowledge about advance care planning.

Aim: To describe the level of implementation, mechanisms of impact, and contextual factors.

Action plans increase advance care planning documentation and engagement among English and Spanish-speaking older adults.

Background: Advance care planning (ACP) has been reconceptualized as a health behavior. Action plans (APs), or patient-directed mini contracts, improve behavior change. However, no prior studies have assessed whether APs can increase ACP documentation and engagement.

Identification of older adults with Alzheimer's and related dementias among patients newly diagnosed with cancer: A comparison of methodological approaches.

Introduction: Research efforts to characterize and evaluate care delivery and outcomes for older adults with cancer and comorbid dementia are limited by varied methods used to classify Alzheimer's disease and related dementias (ADRD). The purpose of this study is to evaluate differences in demographic, clinical, and cancer characteristics of people newly diagnosed with cancer and concomitant dementia comparing two common methods to identify ADRD using administrative claims data.

Materials And Methods: We conducted a retrospective cohort study using Surveillance, Epidemiology, and End Results (SEER)-Medicare data.

Supporting early-career dementia researchers: Identifying support needs and ways forward via a European study.

Introduction: Early-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs.

Advance Care Planning in Belgium.

This paper aims to 1) describe current levels of Advance Care Planning (ACP) development since 2002 in Belgium, 2) report on challenges and opportunities to inspire other countries with similar contextual characteristics and 3) support further development of ACP practice and research in Belgium. To address these aims, we consulted local researchers, 12 domain experts and (grey) literature (regulatory documents, reports, policy documents and practice guidelines) on ACP, palliative care, and related healthcare topics. Since 2002, when the Patient's Right Law was passed in the federal Parliament, Belgium has had a specific medicolegal context for ACP.

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

Introduction: People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD).

Unmet health-related needs of community-dwelling older adults during COVID-19 lockdown in a diverse urban cohort.

Background: Shelter-in-place orders during the COVID-19 pandemic created unmet health-related and access-related needs among older adults. We sought to understand the prevalence of these needs among community-dwelling older adults.

Methods: We performed a retrospective chart review of pandemic-related outreach calls to older adults between March and July 2020 at four urban, primary care clinics: a home-based practice, a safety net adult medicine clinic, an academic geriatrics practice, and a safety net clinic for adults living with HIV.

Effects of a theory-based advance care planning intervention for nursing homes: A cluster randomized controlled trial.

Background: Uptake of advance care planning in routine nursing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+ intervention.

Aims: To evaluate the effects of ACP+ on the knowledge and self-efficacy (confidence in own skills) of nursing home care staff concerning advance care planning.

Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease.

We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data.

Advance care planning for adolescents with cancer and their parents: study protocol of the BOOST pACP multi-centre randomised controlled trial and process evaluation.

Background: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology.

Advance care planning in nursing homes: new conversation and documentation tools.

Although advance care planning (ACP) is highly relevant for nursing home residents, its uptake in nursing homes is low. To meet the need for context-specific ACP tools to support nursing home staff in conducting ACP conversations, we developed the ACP+intervention. At its core, we designed three ACP tools to aid care staff in discussing and documenting nursing home resident's wishes and preferences for future treatment and care: (1) an extensive ACP conversation guide, (2) a one-page conversation tool and (3) an ACP document to record outcomes of conversations.

Earlier initiation of palliative care in the disease trajectory of people living with dementia: a scoping review protocol.

Introduction: While the need for palliative care for people living with dementia has widely been recognised, they continue to be a disadvantaged group when it comes to timely initiation, and controversies remain regarding appropriate timing, or what elements constitute high quality palliative care early in the disease trajectory. To date, no literature review has summarised this debate or offered insights. The aim of this scoping review is to provide a general overview of research regarding palliative care in mild or moderate dementia, to identify existing controversies, and to examine what are key components of palliative care in dementia, specifically when initiated earlier in the disease trajectory.

Developing eHealth tools for diverse older adults: Lessons learned from the PREPARE for Your Care Program.

Background/objectives: Electronic Health (eHealth) tools offer opportunities for people to access health information online; yet, most tools are not designed to meet the unique needs of diverse older adults, leading to health disparities. Our goal was to provide guidance for the development of eHealth tools for diverse older populations for use in geriatric care models.

Design: Guidance for eHealth tools was compiled from user design resources and eHealth design literature.

Differences in advance care planning among nursing home care staff.

Background: A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well.

Objectives: To examine to what extent engagement in advance care planning practices (e.

International COVID-19 Palliative Care Guidance for Nursing Homes Leaves Key Themes Unaddressed.

COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations.

Nurses' self-efficacy, rather than their knowledge, is associated with their engagement in advance care planning in nursing homes: A survey study.

Background: Considering social cognitive theory and current literature about successful advance care planning in nursing homes, sufficient knowledge and self-efficacy are important preconditions for staff to be able to carry out advance care planning in practice.

Aim: Exploring to what extent nurses' knowledge about and self-efficacy is associated with their engagement in advance care planning in nursing homes.

Design: Survey study as part of a baseline measurement of a randomised controlled cluster trial (NCT03521206).

Implementing the theory-based advance care planning ACP+ programme for nursing homes: study protocol for a cluster randomised controlled trial and process evaluation.

Background: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change.

Implementing advance care planning in routine nursing home care: The development of the theory-based ACP+ program.

Background: While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice.

Objectives: We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner.