A ticking time bomb : the lived experience of adult individuals diagnosed with amyotrophic lateral sclerosis

Abstract

Background: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease with involvement of the upper and lower motor neurons in the brain and spinal cord. It is characterised by progressive muscle atrophy and to date it is incurable. The aetiology of the disease remains unclear. Patients with ALS face many challenges due to the debilitating nature of the illness and mainly depend on supportive and palliative care. There is a paucity of literature on the lived experiences of individuals diagnosed with ALS, both from a local and international perspective. Aim: The aim of this study was to explore the lived experience of individuals diagnosed with ALS. The objectives of this dissertation were to investigate the impact of living with a neurodegenerative disease and how they strive to cope. Design: A qualitative phenomenological study following the principles and guidelines for an Interpretative Phenomenological Analysis (IPA). Setting: Semi-structured audio-recorded interviews carried out at Dar Bjorn, a residential community home for individuals with ALS and other neurological disorders and the participants’ residences respectively. Participants: Five adult participants diagnosed with ALS were involved in this study. Method: To recruit participants, purposive sampling was used. The data was transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Results: Two super-ordinate themes emerged from this study, namely, ‘A ticking time-bomb’ and ‘Striving to stay afloat’. The super-ordinate theme, ‘A ticking time-bomb’ described the biopsychosocial impact ALS sufferers have to contend with on a daily basis. The second super- ordinate theme, ‘Striving to stay afloat’, describes the coping strategies adopted by the participants to come to terms with a fatal and neurodegenerative disease. Such strategies include focusing on spirituality, facing ALS with courage and living the present. Conclusion: ALS is a rare neurological disorder that is not only fatal but also debilitating in nature and will ultimately result in a loss of independence and autonomy. A diagnosis of ALS is daunting and had a profound physical and emotional impact on the participants. This study goes into depth about how the participants strived to cope with a disease that is known for its rapid progression and devastating symptoms that ultimately renders them completely reliant on their caregivers. Additionally, the findings revealed the strength, courage and resilience that the participants showed despite being diagnosed with ALS.