Year: 2009
Type: dissertation
Abstract: Although the management of Motor Neuron Disease (MND) remains devoid of a \ncure, persons affected by this devastating condition are nonetheless entitled to the best \nquality care that is available. A paucity of information exists documenting the \nperceptions of healthcare consumers regarding the management that is provided. In \naddition optimal healthcare comprises an intricate interaction of patient-centred care, \npatient-centred communication, and bioethical practice, and when these three \ndimensions are implemented according to acceptable standards, high-quality \nhealthcare is perceived by the healthcare consumer. Given however the socio-political \nchallenges that face healthcare systems, the management of MND needs to be \nconsidered against current trends in service delivery and the need for evidence-based \nmedicine. An exploratory study was therefore conducted to investigate the perceptions \nof persons with MND and their family members regarding current medical and \nrehabilitative management. The sample comprised six persons with MND who \npresented with a communication impairment, as well as six family members. \nParticipants’ perceptions were elicited through the use of a semi-structured interview \nschedule, and questions focused on healthcare professionals’ behaviours during \nhealthcare encounters. In addition emphasis was placed on the potential of the \ncommunication impairment to influence management. A standardised dysarthria \nassessment was conducted to characterise the nature of the speech impairment in each \nperson with MND. Qualitative responses obtained from the interviews were analysed \nin accordance with a matrix-based approach, while quantitative data from the \ndysarthria assessment were analysed using descriptive statistics. Despite individual \nvariability, perceptions of both persons with MND and their family members revealed \ngeneral dissatisfaction with regard to medical and rehabilitative management. The \nmajority of persons with MND were not referred for intervention following diagnosis, \nand the recommended team approach for the management of MND was absent. In \naddition the bioethical practice of many healthcare professionals was deemed \nquestionable, and the communication impairment was perceived to impose a \nsignificant burden on the healthcare encounter. Furthermore all participants perceived \na lack of available support systems for persons with MND, and it was thus not \nuncommon for individuals to pursue complementary and alternative medicine. South \nAfrica’s current healthcare climate also appeared to further limit healthcare for this \nclinical population. In an attempt to improve the management of MND, implications \nare provided in terms of health communication, intervention, bioethical practice, and \nsupport systems. A proposed new framework of ideal service delivery for healthcare \nconsumers of MND management is also presented. Further implications are outlined \nwith regard to the need for innovative models of service delivery in South Africa’s \nhealthcare context, as well as the role of speech-language pathologists, other \nhealthcare professionals, policy makers, and educators in the improvement of the \nmedical and rehabilitative management of MND. Finally theoretical implications and \nimplications for future research are also documented.
Author: Colette Lea Marett
Language: English
Topic: Voice and Speech Disorders
Subfield: Speech and Hearing
Field: Health Professions
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2285801617