Needs of persons living with ALS at home and their family caregivers: A scoping review
Abstract Introduction/Aims Most persons with amyotrophic lateral sclerosis (ALS) live at
home with support of family caregivers, with escalating complexity of care over the trajectory …
home with support of family caregivers, with escalating complexity of care over the trajectory …
[HTML][HTML] The palliative care information needs of patients with amyotrophic lateral sclerosis and their informal caregivers: a scoping review
J Gillespie, A Przybylak-Brouillard, CL Watt - Journal of Pain and Symptom …, 2021 - Elsevier
Abstract Context Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease,
associated with impaired quality of life for patients and caregivers. As treatment is largely …
associated with impaired quality of life for patients and caregivers. As treatment is largely …
The information needs of Chinese family members of cancer patients in the online health community: what and why?
D Ma, M Zuo, L Liu - Information Processing & Management, 2021 - Elsevier
Meeting the information needs of cancer patients' family members is critical for improving
care quality and family members' well-being. An online health community (OHC) can be an …
care quality and family members' well-being. An online health community (OHC) can be an …
What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project
SK Genuis, W Luth, T Bubela, WS Johnston - Muscle & Nerve, 2023 - Wiley Online Library
Abstract Introduction/Aims Health communication is central to effective, supportive
amyotrophic lateral sclerosis (ALS) clinical care. Guidance for ALS communication is limited …
amyotrophic lateral sclerosis (ALS) clinical care. Guidance for ALS communication is limited …
[HTML][HTML] Longitudinal changes of COVID-19 symptoms in social media: observational study
S Sarabadani, G Baruah, Y Fossat, J Jeon - Journal of medical Internet …, 2022 - jmir.org
Background In December 2019, the COVID-19 outbreak started in China and rapidly spread
around the world. Many studies have been conducted to understand the clinical …
around the world. Many studies have been conducted to understand the clinical …
Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs
M Sommers-Spijkerman, N Rave… - BMC psychology, 2022 - Springer
Background Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and
primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses …
primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses …
Using the concept of health literacy to understand how people living with motor Neurone disease and Carers engage in Healthcare: A longitudinal qualitative study
The growing body of information-seeking and decision-making literature in motor neurone
disease (MND) has not yet explored the impact of health literacy. Health literacy relates to …
disease (MND) has not yet explored the impact of health literacy. Health literacy relates to …
Information needs and preferences of family caregivers of patients with amyotrophic lateral sclerosis
HS Chu, J Oh - Journal of Neuroscience Nursing, 2020 - journals.lww.com
OBJECTIVE: The aim of this study was to explore the information needs and preferred
sources of information of Korean family caregivers of patients with amyotrophic lateral …
sources of information of Korean family caregivers of patients with amyotrophic lateral …
[HTML][HTML] Stroke Survivors and Their Family Caregivers' Experiences of Health Information Seeking: A Qualitative Study
F Merati-Fashi, A Dalvandi, ZP Yekta - International Journal of …, 2022 - ncbi.nlm.nih.gov
Background: Stroke is a significant and unpredictable event that affects physical and mental
functions. A useful approach to returning to a normal life is to seek out health information …
functions. A useful approach to returning to a normal life is to seek out health information …
Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis
SK Genuis, W Luth, T Bubela, WS Johnston - BMC neurology, 2022 - Springer
Background People with amyotrophic lateral sclerosis (ALS) are at high risk for severe
outcomes from Covid-19 infection. Researchers exploring ALS and Covid-19 have focused …
outcomes from Covid-19 infection. Researchers exploring ALS and Covid-19 have focused …