What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care?

t are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Original Research (601) Total Article Views Authors: Hogden A, Greenfield D, Nugus P, Kiernan MC Published Date February 2013 Volume 2013:7 Pages 171 - 181 DOI: http://dx.doi.org/10.2147/PPA.S40783 Received: 27 November 2012 Accepted: 21 December 2012 Published: 28 February 2013 Anne Hogden,1 David Greenfield,1 Peter Nugus,1 Matthew C Kiernan2 1Centre for Clinical Governance Research, Australian Institute of Health Innovation, University of New South Wales, 2Prince of Wales Clinical School, University of New South Wales and Neuroscience Research Australia, Sydney, NSW, Australia Purpose: Family carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to have frequent involvement in decision-making for symptom management and quality of life. To better understand and improve decision-making, we investigated the range and extent of carer participation in decision-making. By focusing on the perspectives of ALS support carers, the study aimed to explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multidisciplinary care. Participants and methods: An exploratory, in-depth study was conducted with eight carers of ALS patients from two specialized ALS multidisciplinary clinics. Carers participated in semi-structured interviews that were audio recorded and transcribed then coded and analyzed for emergent themes. Results: Carers made a significant contribution to ALS decision-making. Their roles were: promoting the patient voice, promoting patient health literacy, and providing emotional support and logistical assistance. Facilitators of carer participation in decision-making were perceived to be: health professional endorsement of patients' decision-making style; access to credible information sources; evidence-based information from the ALS clinic, ALS support association, and health practitioners; supportive relationships with family and friends; spiritual faith; ease of contact with ALS services; and availability of physical and practical support for carers. Barriers to carer participation included: changes to patient communication and cognition; conflict between respect for patients' independence and patients' best interest; communication breakdown between patient, carer, and service providers; the confronting nature of disease information; credibility of Internet sites; carer coping strategies; lack of support for the carer; and the burden of care. Conclusion: Carers enhance ALS patient-centered care through their participation in decision-making. They collaborate with patients and health professionals to form a decision-making triad within specialized multidisciplinary ALS clinical care. Nevertheless, health professional engagement with carers as collaborative partners is acknowledged to be a significant challenge.