Abstract

This study aimed to investigate the mechanisms through which social support and felt stigma influence the relationship between motor neurone disease (MND)-related stress and psychological distress for people with MND. Although a lack of social support has been identified as a significant predictor of psychological distress for individuals with MND, the mechanisms through which this relationship exists have not been assessed, nor have the predictive nature of stigma. Furthermore, the theoretical model specifying the effects of enacted stigma on self-stigma has not been tested in individuals with MND. A cross-sectional design utilizing an online survey method was used. It was hypothesized that social support would moderate the relationship between MND-related stress (operationalized as enacted stigma or physical functioning) and psychological distress (operationalized as depression, anxiety, and stress). Furthermore, felt stigma would significantly mediate the relationship between MND-related stress (enacted stigma) and psychological distress. Individuals with a diagnosis of MND were recruited internationally through social media and through various organizations and support services. Seventy-seven participants completed the online survey. Significant correlations were identified between social support, felt, and enacted stigma and psychological distress. Moderation analysis was not significant. However, the mediation analyses identified felt stigma as a significant mediator of the relationship between enacted stigma and psychological distress. A direct relationship between enacted stigma and stress (but not depression and anxiety) was also evident. A comprehensive approach to tackling stigma is important in ameliorating psychological distress for people with MND. Limitations of the current study are discussed, along with implications for clinical practice.

Highlights

  • Motor neurone disease (MND), referred to as amyotrophic lateral sclerosis (ALS) and Lou Gehrig disease in the US, is a life-limiting neurodegenerative condition

  • The mean (SD) score for the SA-ALSFRS-R was 29 (8.62), indicating that levels of independent functioning were within the mid-point range

  • The mean score for the Multidimensional Scale of Perceived Social Support (MSPSS) total (M = 66.47; SD = 15.66) indicated that levels of social support were towards the higher end of the scale for this sample

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Summary

Introduction

Motor neurone disease (MND), referred to as amyotrophic lateral sclerosis (ALS) and Lou Gehrig disease in the US, is a life-limiting neurodegenerative condition. The effects of MND are not limited to motor functions; behaviour difficulties, cognitive impairment (McCluskey et al, 2009; Strong et al, 1999), emotional difficulties (depression, anxiety and anger) and involuntary changes in mood (Orrell, 2016) are common. Current interventions for individuals with MND mainly focus upon the physical aspects of the condition, to maintain physical and biological functioning and quality of life for as long as possible (Andersen et al, 2012). The authors proposed that the psychological impact of receiving, adjusting and coping with this diagnosis should be considered with the physical impact of the condition

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