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The Impact of Communication on Healthcare Involvement for People Living with Motor Neurone Disease and Their Carers: A Longitudinal Qualitative Study

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Title: The Impact of Communication on Healthcare Involvement for People Living with Motor Neurone Disease and Their Carers: A Longitudinal Qualitative Study
Language: English
Authors: Paynter, Camille, Mathers, Susan, Gregory, Heidi, Vogel, Adam P., Cruice, Madeline
Source: International Journal of Language & Communication Disorders. Nov-Dec 2022 57(6):1318-1333.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 16
Publication Date: 2022
Document Type: Journal Articles
Reports - Research
Descriptors: Interpersonal Communication, Neurological Impairments, Speech Impairments, Access to Health Care, Attitudes, Caregivers, Family (Sociological Unit), Diseases, Cognitive Ability, Barriers, Augmentative and Alternative Communication, Caregiver Role
DOI: 10.1111/1460-6984.12757
ISSN: 1368-2822
1460-6984
Abstract: Background: Communication and cognitive impairments are known barriers to shared decision-making. Most people diagnosed with motor neurone disease (MND) will develop a motor speech impairment over the disease course. Some will develop cognitive, linguistic or behavioural disturbance. Despite this, the impact of communication and cognitive impairment on personal healthcare decision-making in MND is not well known. Aims: This exploratory, longitudinal study aimed to capture the perspectives of people living with MND (plwMND) and family members on managing their healthcare with, or in anticipation of, a communication impairment. Methods & Procedures: Semi-structured interviews and functional assessments were conducted with plwMND and family members over one to three time points between December 2017 and January 2020. Participants were recruited from a specialist MND clinic using a maximum variation sampling approach. Interview transcripts were analysed using trajectory data analysis: a matrix-based approach for thematic analysis of longitudinal data. The study was underpinned by interpretive descriptive methodology. Outcomes & Results: A total of 19 plwMND with a range of MND phenotypes and 15 family members were recruited. Disease progression and participant withdrawal resulted in attrition, however 12 plwMND and seven family members participated at all three time points. Consistent cognitive screening was not feasible, which limited the opportunity to explore the impact of cognitive change. An overarching theme 'Communicating takes effort' was identified and illustrates the efforts required to compensate for, or circumnavigate, impairments to maintain involvement in healthcare. Assistance from family and accommodation from healthcare professionals (HCPs) was needed for ongoing engagement. Where plwMND were dependent on alternative communication devices, this assistance was essential and primarily carried out by family members. Despite these efforts, the quality, quantity and accuracy of communication were sometimes compromised. Participants equated good communication with receiving good healthcare, and some expressed anxiety in the anticipation of being unable to express their needs to healthcare workers. Conclusion & Implications: Communication impairment has a direct impact on healthcare involvement. This study demonstrates the effort required by plwMND and their carers to maintain or maximize ongoing involvement. This effort may not always be visible to HCPs. This information may prompt clinicians to consider the best ways to conduct clinical consultations to accommodate patients' abilities. Compromised communication experiences can be moderated by accommodations and support from HCPs and appropriate adjustments in the health system. Asking patients about their communication preferences and needs, allowing extra time and conducting multidisciplinary sessions are examples of such support.
Abstractor: As Provided
Entry Date: 2022
Accession Number: EJ1355779
Database: ERIC
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  Data: The Impact of Communication on Healthcare Involvement for People Living with Motor Neurone Disease and Their Carers: A Longitudinal Qualitative Study
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  Data: <searchLink fieldCode="AR" term="%22Paynter%2C+Camille%22">Paynter, Camille</searchLink><br /><searchLink fieldCode="AR" term="%22Mathers%2C+Susan%22">Mathers, Susan</searchLink><br /><searchLink fieldCode="AR" term="%22Gregory%2C+Heidi%22">Gregory, Heidi</searchLink><br /><searchLink fieldCode="AR" term="%22Vogel%2C+Adam+P%2E%22">Vogel, Adam P.</searchLink><br /><searchLink fieldCode="AR" term="%22Cruice%2C+Madeline%22">Cruice, Madeline</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Language+%26+Communication+Disorders%22"><i>International Journal of Language & Communication Disorders</i></searchLink>. Nov-Dec 2022 57(6):1318-1333.
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: 16
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  Data: 10.1111/1460-6984.12757
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  Data: 1368-2822<br />1460-6984
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Communication and cognitive impairments are known barriers to shared decision-making. Most people diagnosed with motor neurone disease (MND) will develop a motor speech impairment over the disease course. Some will develop cognitive, linguistic or behavioural disturbance. Despite this, the impact of communication and cognitive impairment on personal healthcare decision-making in MND is not well known. Aims: This exploratory, longitudinal study aimed to capture the perspectives of people living with MND (plwMND) and family members on managing their healthcare with, or in anticipation of, a communication impairment. Methods & Procedures: Semi-structured interviews and functional assessments were conducted with plwMND and family members over one to three time points between December 2017 and January 2020. Participants were recruited from a specialist MND clinic using a maximum variation sampling approach. Interview transcripts were analysed using trajectory data analysis: a matrix-based approach for thematic analysis of longitudinal data. The study was underpinned by interpretive descriptive methodology. Outcomes & Results: A total of 19 plwMND with a range of MND phenotypes and 15 family members were recruited. Disease progression and participant withdrawal resulted in attrition, however 12 plwMND and seven family members participated at all three time points. Consistent cognitive screening was not feasible, which limited the opportunity to explore the impact of cognitive change. An overarching theme 'Communicating takes effort' was identified and illustrates the efforts required to compensate for, or circumnavigate, impairments to maintain involvement in healthcare. Assistance from family and accommodation from healthcare professionals (HCPs) was needed for ongoing engagement. Where plwMND were dependent on alternative communication devices, this assistance was essential and primarily carried out by family members. Despite these efforts, the quality, quantity and accuracy of communication were sometimes compromised. Participants equated good communication with receiving good healthcare, and some expressed anxiety in the anticipation of being unable to express their needs to healthcare workers. Conclusion & Implications: Communication impairment has a direct impact on healthcare involvement. This study demonstrates the effort required by plwMND and their carers to maintain or maximize ongoing involvement. This effort may not always be visible to HCPs. This information may prompt clinicians to consider the best ways to conduct clinical consultations to accommodate patients' abilities. Compromised communication experiences can be moderated by accommodations and support from HCPs and appropriate adjustments in the health system. Asking patients about their communication preferences and needs, allowing extra time and conducting multidisciplinary sessions are examples of such support.
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