Investigation of the effectiveness of an ecologically valid telerehabilitation system for the assessment and primary management of neurogenic dysphagia in a resource constrained country.
Ayanikalathi, Narayanan Sona.
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India is undergoing remarkable industrialisation, economic and demographic changes resulting in a transition towards lifestyle related cardiovascular and cerebrovascular diseases and TBI. There is an increased number of individuals living with different physical, cognitive or affective sequelae of CVA and TBI. It leaves patients with several residual disabilities like physical dependence, communication impairment and dysphagia. Given the knowledge that CVA and TBI patients presenting with dysphagia are at a risk for pneumonia, there is even more need to manage dysphagia to prevent subsequent pneumonia. Intervention of dysphagia is scarcely available in resource constrained countries due to various reasons. There is a dearth of dysphagia experienced speech language pathologists in India due to the wide geographic range and increasing population. In such cases, when there is a shortage of trained staff in underserved areas, a feasible solution may be to adopt TR. This is in light that TR is an emerging novel method and various studies are being conducted using TR for speech language pathology services. TR studies on management of dysphagia have been conducted in economically developed countries like USA, Australia, etc. and mostly in controlled settings. Reports on impact of application of TR for management of dysphagia in resource constrained countries are almost absent. Ecological validity i.e. can results obtained under controlled research setting be generalised to those obtained in real life settings, and effectiveness, i.e. is it successful in producing desired outcome in dysphagia assessment, need to be assessed when considering developing a TR for use in India for the intervention of dysphagia, hence trying to investigate if the studies conducted successfully in the economically advanced countries be replicated in India. Hence the researcher deemed it necessary to conduct the current study with the aim to investigate the effectiveness of an ecologically valid TR system for the assessment and primary management of neurogenic dysphagia in India. The current thesis is a series of three phases. The first phase (Chapter 2) aimed to explore the current literature available regarding the use of TR in the intervention of dysphagia using a narrative literature review. The objectives were to investigate the current status and feasibility of TR in the assessment and/or management of dysphagia and to identify the benefits and limitations of the studies to explain ecological validity of TR. The narrative literature review aided the researcher to identify that TR is a feasible method for the intervention of dysphagia in economically developed countries. It emphasized the gap in knowledge on the use of TR for the intervention of dysphagia in resource constrained country as there are no studies reported. Hence, the researcher identified that the literature review augmented her idea that ecological validity of TR needed to be identified and thus its effectiveness when implementing it in resource constrained countries, because the patient, clinician, technology and context related factors do play a major role. The identified factors were explored in greater detail in phase two, to ensure that the TR implementation for the intervention of neurogenic dysphagia is contextually responsive and holistic, based on the paradigm shift to a constructivist one, ontologically, epistemologically and methodologically. The second phase (Chapter 4) aimed to investigate the ecological validity of TR in a resource constrained country such as India. Its objectives were to investigate the current status of TR in India through an understanding of the knowledge and attitude of TR personnel and to identify the variables that affect the ecological validity of TR in India based on the practice of the TR personnel. The semi structured interviews of TR personnel in India aided the researcher to acknowledge that patient, clinician, technology and context related factors can affect the ecological validity of TR in a resource constrained country, which in turn will affect its effectiveness. However, tele-mode service delivery in India is a feasible proposition, and in fact, several institutions have successfully implemented it. TR and TR for the intervention of dysphagia can be an answer to the needs of people in the underserved areas in India. With the outcomes from this phase, as well as based on the conceptual framework developed in phase one, factors such as devices and technology used for TR, the current internet speed available in the study location, materials used for the CSE and real-life outpatient clinical settings were used to establish the ecological validity of TR. Its effectiveness was then investigated. The third phase subsequently aimed to investigate the effectiveness of an ecologically valid TR for the assessment and primary management of neurogenic dysphagia in India. The objectives were to compare the results obtained using CSE through an ecologically valid TR mode and face-to-face mode with the intention to identify if the scores are reliable and to examine and explain the possible effects of the ecological validity variables i.e. patient, clinician, technology and context related factors on the effectiveness of TR in dysphagia assessment. Simulated patients (SP) were used for this phase, which was to avoid any harm to real patients (if used). This can be considered as a main limitation of the study. The quantitative data analysis using percent exact agreement and Cohen’s Kappa scores to rate the inter-rater reliability between the TR-SLP and FTF-SLP, showed that TR was effective in conducting neurogenic dysphagia assessment and primary management. There were high inter-rater reliability in all the cases studied. A descriptive analysis of the results obtained could explain the reason for the variation in scores on certain parameters of the CSE in each case, in relation to the factors affecting the ecological validity. This qualitative descriptive analysis could explain how the various factors could have influenced the performance of the patient and clinician. However, due the small sample size of four SP in study two, the findings cannot be generalised to broader clinical settings. However, there is no denial that the results provide valuable preliminary information for future research of TR in resource constrained country. The findings of the overall study identified the need for treating a new intervention as unique, developing in relation to a complex and potentially unique set of ecological conditions. The researcher identified the need for using a contextually guided framework when developing interventions such as TR, which in turn can improve its effectiveness. The results obtained from the current study feed motivation for future studies using real patients, first to be done in a controlled setting to reduce the risk of the consequences due to aspiration or choking during the assessment. The results of the current study will help and be an inspiration in future large-scale studies in resource constrained country and is food for thought for those already using TR for speech language therapy services in such settings.