TY - JOUR
T1 - Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis
T2 - The views of health professionals
AU - Hogden, Anne Vaughan
AU - Greenfield, David
AU - Nugus, Peter
AU - Kiernan, Matthew C.
N1 - Copyright the Author(s) 2012. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.
PY - 2012
Y1 - 2012
N2 - Background: The aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making. Methods: Thirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically. Results: Respondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information. Conclusion: Patient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.
AB - Background: The aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making. Methods: Thirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically. Results: Respondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information. Conclusion: Patient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.
UR - http://www.scopus.com/inward/record.url?scp=84874809830&partnerID=8YFLogxK
U2 - 10.2147/PPA.S36759
DO - 10.2147/PPA.S36759
M3 - Article
C2 - 23055703
AN - SCOPUS:84874809830
SN - 1177-889X
VL - 6
SP - 691
EP - 701
JO - Patient Preference and Adherence
JF - Patient Preference and Adherence
ER -