"It's really very disturbing ot me": The Social Reality and Real-Life Challenges of Living with Oro-Pharyngeal Dysphagia

Abstract

This piece of research sought to explore the psychosocial experiences of oro-pharyngeal dysphagia, through means of analysing online first person, personal accounts, in an effort to improve general understanding of the disorder and enhance clinical practice. By exploring first person accounts of living with oro-pharyngeal dysphagia, one can gain insight into individuals’ perspectives and attitudes regarding their difficulties, helping to identify the real-life challenges for this clinical population. A qualitative, inductive approach to research was carried out using an interpretative phenomenological approach (IPA) to analyse the data. This approach is concerned with the examination of how individuals make sense of major life experiences, and is concerned with an individual’s personal perception of a particular event and/or series of events (Smith & Osborn, 2007). For the purpose of this study, eight first person, oral and written accounts documenting adults’ experience of living with oro-pharyngeal dysphagia, were selected from online sources, and transcribed verbatim, to provide sufficient development of meaningful themes within and across each data set. The accessible, readily available personal account material that constitutes public data and serves a purpose to educate the masses, provides an opportunity to ‘get close’ to the personal world of individuals with oro-pharyngeal dysphagia, in an effort to improve our knowledge and understanding of the disorder, by exploring personal experiences and accessing a range of voices and perspectives from those living with it. It is for this reason, online material was chosen as the study’s data set. Textual and interpretive analyses exploring descriptive, linguistic and conceptual features revealed 11 themes, from which four superordinate themes emerged. Analysis revealed Life Changes as a significant superordinate theme, with each individual’s account suggesting that an altered lifestyle was synonymous with the diagnosis of dysphagia. Four emergent themes informed this superordinate theme: 1) Altered lifestyle, 2) Eating and Drinking Thrills and Challenges, 3) Struggles and 4) Loss of Social Connection. Additionally, Emotional Upheaval was revealed as a superordinate theme, given the emotional disturbances experienced by the individuals, as a result of their diagnosis. Two emerging themes informed this superordinate theme: 1) Grief and Devastation and 2) Feelings of Injustice. Although major negative consequences of oro-pharyngeal dysphagia have been revealed from the study’s findings, professional and familial involvement constitutes the third superordinate theme. Both supportive relationships and lack of supportive relationships have been documented within and across the personal accounts under analysis. Thus, the two significant emerging themes relating to professional and familial involvement are 1) Support and 2) Lack of Support. Despite personal limitations, negative emotions and life-changing effects of dysphagia, analysis revealed talk of hope and various healing mechanisms as equally apparent components revealed from the analysed personal accounts. Three significant emerging themes informed the superordinate theme Hope and Healing- 1) Faith and Acceptance, 2) Gratitude 3) Hope. In an effort to achieve a view of the individuals’ perspectives of their disorders, the concerning central problem was revealed as having to live a completely altered lifestyle, resulting from both the disorder itself, and their own and other people’s responses to it. The findings from this study not only emphasise the importance of understanding the real-life challenges faced by these individuals and the requisite skills SLTs must exhibit to ensure sufficiently holistic management, but can also be used to guide clinical practice and management in other illnesses and disorders, due to the universality of emerging themes. The data from this study provides invaluable information concerning the patient’s social reality and emotional well-being, as it exploited readily available data to educate and inform SLTs on the sweeping effects of an illness and or/disorder. Subsequently, findings from this study provide the profession, with greater understanding and invaluable information that can be utilised for an expanded focus on comprehensive patient-centred care and has highlighted the importance of integrating the two professional identities of Speech and Language Therapist and Counsellor. Furthermore, findings have provided information to guide and enhance clinical practice regarding the ‘well-being’ component of the ICF, while concurrently bringing knowledge and information concerning the psychosocial experiences of oro-pharyngeal dysphagia to the forefront for both clinicians and patients. This in turn, can be utilised to ensure individuals receive a holistic model of care that is true and meaningful and which does not exclusively address only the impairment, but rather addresses the individual themselves.