Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers

To explore the experiences of people living with amyotrophic lateral sclerosis (ALS) and their caregivers managing cough and secretion problems. A qualitative study was completed with 15 individuals participating in 10 interviews; 10 people living with ALS and five informal caregivers. Interview methods were adapted to ensure inclusivity of participants who had physical, respiratory and communication impairments. Data was analysed inductively using reflexive thematic analysis. Our analysis identified the challenges of living day to day with cough and secretion problems. Care coordination and the presence of informal caregivers were important in ensuring that cough and secretion interventions could be implemented successfully. Participants felt access to cough and secretion knowledge and skills specific to ALS was key to supporting care and supported them to acquire information which influenced decision-making around their care. Cough and secretion care in ALS is multifaceted and multifactorial. Future development of clinical interventions in this area are needed to support the complex web of professionals, treatments and knowledge to optimise care. Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurological disease which causes loss of motor, respiratory and swallowing functions with no cure.Problems with cough weakness and managing secretions are common in ALS and present a day to day “battle” for people living with these issues.Knowledge and skills of ALS for healthcare professionals, people with ALS and caregivers, are important to ensure coordination of cough and secretion care and support implementation of supportive interventions.Interventions that upskill healthcare professionals, people with ALS and caregivers in the knowledge and skills of cough and secretion management need to be developed. Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurological disease which causes loss of motor, respiratory and swallowing functions with no cure. Problems with cough weakness and managing secretions are common in ALS and present a day to day “battle” for people living with these issues. Knowledge and skills of ALS for healthcare professionals, people with ALS and caregivers, are important to ensure coordination of cough and secretion care and support implementation of supportive interventions. Interventions that upskill healthcare professionals, people with ALS and caregivers in the knowledge and skills of cough and secretion management need to be developed.