Purpose: The Chinese community constitutes the largest demographic and faces the highest rates of cancer incidence in Singapore. Given this, palliative care plays a crucial role in supporting individuals, particularly those nearing the end of life, with family serving as their primary source of support. Many Chinese family caregivers in Singapore reported significant unmet needs in cancer care provision, with studies indicating that they often bear the brunt of caregiving responsibilities. Despite this, there has been a lack of research exploring the needs and perspectives of Chinese Singaporean family caregivers caring for terminally ill cancer patients at home. Thus, this study seeks to address this gap by investigating the lived experiences of Chinese Singaporean family caregivers providing end-of-life cancer care in a home setting.
Methods: This study employed a hermeneutic phenomenological approach, guided by the framework developed by van Manen (1990), to uncover the essential meaning of each participant's lived experience. In-depth, semi-structured virtual interviews were conducted face-to-face with ten Chinese Singaporean family caregivers. These caregivers shared their personal journeys of caring for a loved one with advanced cancer during their final stage of life at home. The interviews were audio recorded, and open-ended questions were used to facilitate discussion. Each interview lasted between 30 and 60 min. The principal investigator manually transcribed all audio recordings. Additionally, an external transcriber translated the interviews into written form to ensure accuracy and authenticity. The interview texts were then analyzed and interpreted using the philosophical underpinnings rooted in phenomenology.
Results: The attempts to identify meanings and make sense of the Chinese Singaporean's lived experience led to the development of two main themes and eight sub-themes. Under the primary theme of "experiences from caregiving" comprises the sub-themes "being a caregiver," "suffering," and "well-being," and the major theme of "expectations in caregiving" encompasses the sub-themes "caregiving support," "decision-making," "communication," "spirituality," and "being a Chinese Singaporean".
Conclusion: In conclusion, addressing family caregivers' needs requires culturally sensitive nursing education, peer support initiatives, public awareness campaigns, and enhanced training for domestic helpers. These measures, coupled with further research into diverse cultural caregiving needs and male caregivers' experiences, will improve support systems and empower caregivers in their essential roles.
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http://dx.doi.org/10.1007/s00520-025-09166-6 | DOI Listing |
J Med Internet Res
January 2025
Department of Basic and Community Nursing, School of Nursing, Nanjing Medical University, NanJing, China.
Background: Telehealth interventions can effectively support caregivers of people with dementia by providing care and improving their health outcomes. However, to successfully translate research into clinical practice, the content and details of the interventions must be sufficiently reported in published papers.
Objective: This study aims to evaluate the completeness of a telehealth intervention reporting in randomized controlled trials (RCTs) conducted for caregivers of people with dementia.
J Particip Med
January 2025
Division of Allergy & Pulmonary Medicine, Washington University School of Medicine, St Louis, MO, United States.
Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management.
Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population-centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it).
Gac Med Mex
January 2025
Laboratorio de Reprogramación Celular y Enfermedades Crónico-Degenerativas, Department of Physiology, Universidad Nacional Autónoma de México, Mexico City, Mexico.
Progressive supranuclear palsy (PSP) is a rare, atypical parkinsonism, characterized by the presence of intracerebral tau protein aggregates and determined by a wide spectrum of clinical features. The definitive diagnosis is postmortem and is identified through the presence of neuronal death, gliosis, and aggregates of the tau protein presented in the form of neurofibrillary tangles (MNF) with a globose appearance in regions such as the subthalamic nucleus, the substantia nigra, and the globus pallidus The findings in ancillary imaging studies, as well as fluids biomarkers, are not sufficient to support diagnosis of PSP but are used to rule out similar pathologies because there are still no specific or validated biomarkers for this disease. The current treatment of PSP is focused on reducing symptoms, although emerging therapies seek to counteract its pathophysiological mechanisms.
View Article and Find Full Text PDFJMIR Form Res
January 2025
Department of Psychiatry and Behavioral Sciences, University of California, San Francisco, San Francisco, CA, United States.
Background: Current research on digital applications to support the mental health and well-being of foster youth is limited to theoretical applications for transition-aged foster youth and support platforms developed without intentional input from foster youth themselves. Centering the lived expertise of foster youth in digital solutions is crucial to dismantling barriers to care, leading to an increase in service access and improving mental health outcomes. Co-design centers the intended end users during the design process, creating a direct relationship between potential users and developers.
View Article and Find Full Text PDFAppl Health Econ Health Policy
January 2025
Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Introduction: Genomic medicine has features that make it preference sensitive and amenable to model-based health economic evaluation. Preferences of patients, caregivers, and clinicians related to the uptake and delivery of genomic medicine technologies and services that are not captured in health state utility weights can affect the intervention's cost-effectiveness and budget impact. However, there is currently no established or agreed-on approach for integrating preference information into economic evaluations.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!