What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

Abstract

Introduction/AimsHealth 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.MethodsData 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.ResultsWe 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.DiscussionHealthcare 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.

‘A lightbulb moment’: carers’ experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit

“…This triangulation seemed to be valuable to carers. Indeed, other MND studies showed overwhelming positive responses from carers [ 26 ] in engaging with therapies and HCPs in communicating [ 27 ] well and supporting their experience of caring for a PwMND [ 23 ]. Future service design should take carers’ needs into consideration.…”

“…It appears that a modulation of HCP involvement would be ideal, with HCPs responding to carers’ need in a dynamic way. Nuanced communications, tailored for the carer, seems to be a good way forward in response to carers’ experiences reported in MiNDToolkit and the scientific literature [ 27 ]. HCPs should be reminded that carers place great value on their input, time, and expertise.…”

Implementation of the MiNDToolkit intervention for the management of behavioral symptoms in MND by healthcare professionals: a mixed-methods process evaluation

“…These assumptions and perceptions, which partly stemmed from HCPs’ lack of training and confidence in identifying behavioral symptoms and providing follow-on support, highlight the need for HCPs to receive specialist training. With recent evidence suggesting that PlwMND and carers rely on clinicians for medical and practical information ( 15 ), it is vital that HCPs receive appropriate training and resources for the management of behavioral symptoms. In addition, it is important that discussions on communication preferences in response to changing needs and disease progression are held early in the therapeutic relationship to eliminate assumptions which might hinder the provision of support ( 15 ).…”