The medical and rehabilitative management of persons with motor neuron disease.
Date
2009-01-28T06:23:10Z
Authors
Marett, Colette Lea
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Abstract
Although the management of Motor Neuron Disease (MND) remains devoid of a
cure, persons affected by this devastating condition are nonetheless entitled to the best
quality care that is available. A paucity of information exists documenting the
perceptions of healthcare consumers regarding the management that is provided. In
addition optimal healthcare comprises an intricate interaction of patient-centred care,
patient-centred communication, and bioethical practice, and when these three
dimensions are implemented according to acceptable standards, high-quality
healthcare is perceived by the healthcare consumer. Given however the socio-political
challenges that face healthcare systems, the management of MND needs to be
considered against current trends in service delivery and the need for evidence-based
medicine. An exploratory study was therefore conducted to investigate the perceptions
of persons with MND and their family members regarding current medical and
rehabilitative management. The sample comprised six persons with MND who
presented with a communication impairment, as well as six family members.
Participants’ perceptions were elicited through the use of a semi-structured interview
schedule, and questions focused on healthcare professionals’ behaviours during
healthcare encounters. In addition emphasis was placed on the potential of the
communication impairment to influence management. A standardised dysarthria
assessment was conducted to characterise the nature of the speech impairment in each
person with MND. Qualitative responses obtained from the interviews were analysed
in accordance with a matrix-based approach, while quantitative data from the
dysarthria assessment were analysed using descriptive statistics. Despite individual
variability, perceptions of both persons with MND and their family members revealed
general dissatisfaction with regard to medical and rehabilitative management. The
majority of persons with MND were not referred for intervention following diagnosis,
and the recommended team approach for the management of MND was absent. In
addition the bioethical practice of many healthcare professionals was deemed
questionable, and the communication impairment was perceived to impose a
significant burden on the healthcare encounter. Furthermore all participants perceived
a lack of available support systems for persons with MND, and it was thus not
uncommon for individuals to pursue complementary and alternative medicine. South
Africa’s current healthcare climate also appeared to further limit healthcare for this
clinical population. In an attempt to improve the management of MND, implications
are provided in terms of health communication, intervention, bioethical practice, and
support systems. A proposed new framework of ideal service delivery for healthcare
consumers of MND management is also presented. Further implications are outlined
with regard to the need for innovative models of service delivery in South Africa’s
healthcare context, as well as the role of speech-language pathologists, other
healthcare professionals, policy makers, and educators in the improvement of the
medical and rehabilitative management of MND. Finally theoretical implications and
implications for future research are also documented.
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Keywords
Motor Neuron Disease, Rehabilitation