Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study.

ABSTRACT:

Objectives

To explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.

Design

Exploratory longitudinal mixed-methods study.

Setting

A national multidisciplinary tertiary clinic in Dublin, Ireland.

Participants

Participants were informal caregivers of people living with ALS (plwALS) attending the national ALS/motor neuron disease Clinic Dublin. This study focuses on informal caregivers who completed five consecutive interviews (n = 17) as part of a larger multisite study, over the course of 2.5 years. Participants were over the age of 18. Formal paid caregivers were not included.

Outcome measures

Data were collected on demographic and well-b

SUBMITTER: Conroy E 

PROVIDER: S-EPMC9872468 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature