What, how and when do families communicate about ALS? A qualitative exploration of parents’ and children’s perceptions

IF 2.5 4区 医学 Q2 CLINICAL NEUROLOGY Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2023-12-09 DOI:10.1080/21678421.2023.2290738
Marion Sommers-Spijkerman, Anna Stukker, Melinda S. Kavanaugh, Marjolijn Ketelaar, Johanna M. A. Visser-Meily, Anita Beelen
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Abstract

Objectives: In families with a parent diagnosed with amyotrophic lateral sclerosis (ALS), children’s adaptation depends among others on how their parents communicate with them about the disease and...
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家庭在什么情况下、如何以及何时就 ALS 进行交流?对父母和子女看法的定性研究
目的:在父母一方被诊断出患有肌萎缩性脊髓侧索硬化症(ALS)的家庭中,儿童的适应能力主要取决于父母如何与他们沟通有关疾病的信息,以及如何与他们进行交流。
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来源期刊
CiteScore
5.40
自引率
10.70%
发文量
64
期刊介绍: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration is an exciting new initiative. It represents a timely expansion of the journal Amyotrophic Lateral Sclerosis in response to the clinical, imaging pathological and genetic overlap between ALS and frontotemporal dementia. The expanded journal provides outstanding coverage of research in a wide range of issues related to motor neuron diseases, especially ALS (Lou Gehrig’s disease) and cognitive decline associated with frontotemporal degeneration. The journal also covers related disorders of the neuroaxis when relevant to these core conditions.
期刊最新文献
The correlation between social support, coping style, advance care planning readiness, and quality of life in patients with amyotrophic lateral sclerosis: a cross-sectional study. Effects of COVID-19 on motor neuron disease mortality in the United States: a population-based cross-sectional study SOD1 gene screening in ALS – frequency of mutations, patients’ attitudes to genetic information and transition to tofersen treatment in a multi-center program How to break the news in amyotrophic lateral sclerosis/motor neuron disease: practical guidelines from experts A nurse coaching intervention to improve support to individuals living with ALS.
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