The management of dysphagia in neurodegenerative disorders : hospice caregivers’ perceptions and practices

Abstract

The aim of this study is to describe hospice caregivers’ perceptions and practices in the management of dysphagia in neurodegenerative disorders. In South Africa, hospices provide support and care for people with neurodegenerative disorders and have been offering palliative care to patients and their families facing life-threatening illnesses since 1989. Detailing the management practices of hospice caregivers may assist in determining whether there is a need for the services of a speech-language therapist in the transdisciplinary model. A non-experimental, descriptive survey research design was selected for the purpose of this study as it allowed the researcher to describe the characteristics of a large number of respondents. Information was gathered by means of mail-distributed, self-administered questionnaires. The collected data was descriptively analysed and graphs and figures were used to summarise and display the frequency distribution and associations within the data. It was evident from the findings that dysphagic patients with neurodegenerative disorders form part of the hospice caregivers’ caseloads. However, there appears to be limited specialist involvement in the management of neurodegenerative dysphagia within the hospice setting. Furthermore, caregivers’ perceptions of the subtle symptoms of dysphagia, the positions that facilitate safe swallowing and the consistencies that are most easily swallowed by people with dysphagia were found to be inadequate. The results obtained have numerous significant clinical and theoretical implications regarding current dysphagia management in the South African hospice setting. Recommendations are made to hospices, speech-language therapists and future researchers.