What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project.
Muscle Nerve
; 68(3): 286-295, 2023 09.
Article
em En
| MEDLINE
| ID: mdl-37462337
ABSTRACT
INTRODUCTION/AIMS:
Health communication is central to effective, supportive amyotrophic lateral sclerosis (ALS) clinical care. Guidance for ALS communication is limited, focuses on diagnosis disclosure, and frequently relies on expert consensus and/or reviews. Patient-based evidence is needed to guide ALS health communication. We investigated how the experiences of ALS patients and family caregivers can inform effective communication practices from diagnosis to end-of-life.METHODS:
Data were drawn from the ALS Talk Project, an asynchronous, online focus group study. Seven focus groups and five interviews (105 participants) were conducted. Data were qualitatively analyzed using directed content analysis and the constant-comparative approach.RESULTS:
We found four primary themes communication content, communication circumstances, information sufficiency, and communication manner. Data indicate participants relied on clinicians for medical information but also wanted practical information; health communication should attend to the circumstances within which conversations occur; information must be sufficient for individual needs, without overwhelming; and an empathetic, direct, and honest manner facilitated trust. Participants identified communication challenges and strategies to improve communication across major themes, including stepwise approaches and conversations tailored to individuals and their heterogeneous disease experiences.DISCUSSION:
Healthcare professionals should discuss patient/caregiver communication preferences early in the therapeutic relationship, co-develop a communication agreement, and update the agreement in response to changing needs and disease progression. This will foster regular discussion of information needs and promote timely discussions of challenging topics, including advance care, while giving patients and families a sense of control. Findings may have implications for other neuromuscular disease and/or seriously ill populations.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Comunicação em Saúde
/
Esclerose Lateral Amiotrófica
Tipo de estudo:
Guideline
/
Prognostic_studies
/
Qualitative_research
Aspecto:
Patient_preference
Limite:
Humans
Idioma:
En
Revista:
Muscle Nerve
Ano de publicação:
2023
Tipo de documento:
Article