Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs.

ABSTRACT:

Background

Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses affecting not only patients but also the families surrounding them, especially when dependent children are involved. Despite previous research highlighting the vulnerability of children in these families, they are, as yet, often overlooked in healthcare. Efforts are needed to better support children in families living with ALS, both directly and through strengthening parents in their parental role. This study sought to gain a better understanding of parental and children's experiences, struggles and support needs in families living with ALS.

Methods

Semi-structured interviews were conducted with 8 par

SUBMITTER: Sommers-Spijkerman M 

PROVIDER: S-EPMC8929294 | biostudies-literature | 2022 Mar

REPOSITORIES: biostudies-literature