The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study

Paynter, Camille; Mathers, Susan; Gregory, Heidi; Vogel, Adam P.; Cruice, Madeline

doi:10.1111/1460-6984.12757

Cited by 3 publications

(3 citation statements)

References 36 publications

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“…For AAC users, successful communication exchange required HCP to provide extra time and support. Engagement in healthcare was facilitated by HCP accommodating communication impairments and recognising individual information preferences which builds on extant literature exploring patient and carer needs [ 16 , 25 , 39 ]. Clinicians may need to accommodate or adjust their usual practice to optimise engagement of persons living with MND and carers in healthcare decisions [ 25 ].…”

Section: Discussionmentioning

confidence: 99%

“…Engagement in healthcare was facilitated by HCP accommodating communication impairments and recognising individual information preferences which builds on extant literature exploring patient and carer needs [ 16 , 25 , 39 ]. Clinicians may need to accommodate or adjust their usual practice to optimise engagement of persons living with MND and carers in healthcare decisions [ 25 ]. Constrained or inflexible health system processes have the potential to limit patient engagement in their healthcare [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

“…The topic guides ( Supplementary Materials ) relate to this broader study, which explored the decisions that people make, or do not make, about interventions, home modifications, advance care planning, etc., as well as how and with whom they make those decisions. Previous studies provide insight into how persons living with MND and carers experience healthcare decision making [ 8 ] and the impact of communication on healthcare involvement [ 25 ]. The opportunity to explore the existing data set through the lens of health literacy was not an a priori study aim but was identified during data collection.…”

Section: Methodsmentioning

confidence: 99%

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Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

et al. 2022

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The growing body of information-seeking and decision-making literature in motor neurone disease (MND) has not yet explored the impact of health literacy. Health literacy relates to the skills people have to access, understand, and use health information and is influenced by motivation to engage with healthcare. We aimed to better understand how people affected by MND engage in healthcare by examining longitudinal interview data using the construct of health literacy. Semi-structured interviews were conducted with 19 persons living with MND and 15 carers recruited from a specialist MND clinic using maximum variation sampling. Transcripts were deductively coded using a framework of health literacy behaviours. The analysis used a matrix-based approach for thematic analysis of longitudinal data. People living with MND and carers sought nuanced information dependent on their priorities and attitudes. Information uptake was influenced by perceived relevancy and changed over time. Time allowed opportunity to reflect on and understand the significance of information provided. The findings indicate that persons living with MND and carers benefit when information and consultations are adapted to meet their communication needs. The results highlight the potential benefits of gaining an early understanding of and accommodating the communication needs, personal preferences, and emotional readiness for information for persons living with MND and their carers.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

et al. 2022

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Accessing and Receiving Speech-Language Pathology Services at the Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Exploratory Qualitative Study of Patient Experiences and Needs

Huynh,

Adams,

Barnett-Tapia

et al. 2023

J Speech Lang Hear Res

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Purpose: This study sought to explore how patients with amyotrophic lateral sclerosis (ALS) presenting with coexisting bulbar and cognitive impairments and their caregivers experienced the speech-language pathologist (SLP) services provided in multidisciplinary ALS clinics in Canada and identified their perceived needs for bulbar symptom management. Method: This qualitative study was informed by interpretive description. Seven interviews were conducted with patients with severe bulbar dysfunction or severe bulbar and cognitive dysfunction due to ALS or ALS-frontotemporal dementia, respectively, and/or their caregivers. Purposive sampling was used to recruit individuals with severe bulbar or bulbar and cognitive disease. Thematic analysis was used to analyze interview data. Results: Patients and caregivers reported difficulties with accessing and receiving SLP services at the multidisciplinary ALS clinic. These difficulties were further exacerbated in those with severe cognitive disease. Participants expressed a need for more specific (i.e., disease and service-related) information and personalized care to address their changing needs and preferences. Engaging caregivers earlier in SLP appointments was perceived as vital to support care planning and provide in-time caregiver education. Conclusions: This study highlighted the challenges experienced by patients and caregivers in accessing and receiving SLP services. There is a pressing need for a more person-centered approach to ALS care and a continuing need for education of SLPs on care provision in cases of complex multisymptom diseases within a multidisciplinary ALS clinic. Supplemental Material: https://doi.org/10.23641/asha.24069222

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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

Paynter

Mathers

Gregory

et al. 2022

Intl J Lang & Comm Disor

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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.

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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

Cited by 3 publications

References 36 publications

Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

Accessing and Receiving Speech-Language Pathology Services at the Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Exploratory Qualitative Study of Patient Experiences and Needs

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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