Although the management of Motor Neuron Disease (MND) remains devoid of audcure, persons affected by this devastating condition are nonetheless entitled to the bestudquality care that is available. A paucity of information exists documenting theudperceptions of healthcare consumers regarding the management that is provided. Inudaddition optimal healthcare comprises an intricate interaction of patient-centred care,udpatient-centred communication, and bioethical practice, and when these threeuddimensions are implemented according to acceptable standards, high-qualityudhealthcare is perceived by the healthcare consumer. Given however the socio-politicaludchallenges that face healthcare systems, the management of MND needs to beudconsidered against current trends in service delivery and the need for evidence-basedudmedicine. An exploratory study was therefore conducted to investigate the perceptionsudof persons with MND and their family members regarding current medical andudrehabilitative management. The sample comprised six persons with MND whoudpresented with a communication impairment, as well as six family members.udParticipants’ perceptions were elicited through the use of a semi-structured interviewudschedule, and questions focused on healthcare professionals’ behaviours duringudhealthcare encounters. In addition emphasis was placed on the potential of theudcommunication impairment to influence management. A standardised dysarthriaudassessment was conducted to characterise the nature of the speech impairment in eachudperson with MND. Qualitative responses obtained from the interviews were analysedudin accordance with a matrix-based approach, while quantitative data from theuddysarthria assessment were analysed using descriptive statistics. Despite individualudvariability, perceptions of both persons with MND and their family members revealedudgeneral dissatisfaction with regard to medical and rehabilitative management. Theudmajority of persons with MND were not referred for intervention following diagnosis,udand the recommended team approach for the management of MND was absent. Inudaddition the bioethical practice of many healthcare professionals was deemedudquestionable, and the communication impairment was perceived to impose audsignificant burden on the healthcare encounter. Furthermore all participants perceiveduda lack of available support systems for persons with MND, and it was thus notuduncommon for individuals to pursue complementary and alternative medicine. SouthudAfrica’s current healthcare climate also appeared to further limit healthcare for thisudclinical population. In an attempt to improve the management of MND, implicationsudare provided in terms of health communication, intervention, bioethical practice, andudsupport systems. A proposed new framework of ideal service delivery for healthcareudconsumers of MND management is also presented. Further implications are outlinedudwith regard to the need for innovative models of service delivery in South Africa’sudhealthcare context, as well as the role of speech-language pathologists, otherudhealthcare professionals, policy makers, and educators in the improvement of theudmedical and rehabilitative management of MND. Finally theoretical implications andudimplications for future research are also documented.
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