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Title: The experience of non-invasive ventilation in motor neurone disease : a qualitative exploration
Author: Piggin, Lucy Helen
Awarding Body: University of Liverpool
Current Institution: University of Liverpool
Date of Award: 2011
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Motor neurone disease (MND) is a fatal neuromuscular illness defined by progressive muscle weakness and wastage. Death typically occurs within 2-3 years from symptom onset and is most often attributable to respiratory complications. Weakness in the respiratory muscles increases the risk of mortality and is also a significant predictor of quality of life in MND, which makes management of respiratory aspects of the condition a vital component of care. The first signs of respiratory insufficiency are typically related to the onset of nocturnal hypoventilation, which can disturb sleep and lead to waking headaches, somnolence, fatigue, impaired concentration, cognitive impairment, reduced appetite, and low mood. The primary means of managing these symptoms is through the use of non-invasive ventilation (NIV). There is a vast quantitative research base charting the impact of NIV. It is known to decrease the number of arousals from sleep, reduce somnolence/fatigue, eliminate waking-headaches, improve cognitive functioning, and may also exert a positive impact on emotional/social functioning in some patients. NIV can also benefit daytime respiratory performance, improving self-rated dyspnoea and slowing the rate of respiratory decline as the illness progresses. Crucially, NIV also affords selected MND patients a significant survival advantage. Existing research offers limited insight into the lived experience of respiratory impairment and NIV use; it is unknown how patients themselves feel about using a ventilator or how they receive the positive clinical outcomes associated with the treatment. This thesis presents a body of qualitative research using interpretative phenomenological analysis (IPA) to explore MND patients' experiences of respiratory impairment and NIV use. The first study, a small cross- sectional enquiry (11=5), reports the experiences of patients already established on the ventilator. This study found complex emotional •and psychological responses to NIV, including reluctance to initiate, fear of dependence and threats to control. Respiratory masks were also found to have a significant negative impact on identity and self-esteem. However, patients felt that the positive physical effects of NIV made this experience acceptable. This cross-sectional study was a preparative step for a subsequent longitudinal study, recruiting patients (11=26) and carers (n=26) prior to ventilation and interviewing them over time as they started using NIV. Two data sets are reported: 'pre-ventilation' and 'post-ventilation' analysis. Pre-ventilation analysis also explored the lived experience of respiratory impairment and treatment decision-making. This longitudinal study found that referral into a respiratory service was an emotionally stressful event for patients; most had been unaware of the prospect of respiratory impairment and were vulnerable to anxiety. Patients seemed to lack insight into their own respiratory status, which appeared to be attributable to both a lack of understanding of respiratory aspects of the condition and difficulties in making sense of respiratory changes within the wider physical context of the illness. Most patients responded negatively to the idea of ventilation, seeing it both as a 'defeat' and as an ominous sign of illness progression, yet they were also comforted by the idea that there was 'help' available to prevent suffering. Patients typically elected not to think about NIV ahead of time, which appeared to be part of a wider 'one day at a time' approach to MND. Patients who went on to trial NIV (11= 12) reported markedly different responses to initiation and variable degrees of involvement in treatment decision-making. Many patients did not feel that intervention was needed. Positive physiological! clinical outcomes did not necessary lead to positive psychological and emotional responses to the treatment and did not ensure that the experience of using a ventilator was a positive one. There were a number of practical and psychological challenges that determined tolerance and compliance with the treatment; however, the same challenges were often perceived differently by different patients. It was not possible to predict 'success' on NIV based on clinical or demographic variables alone. Patients' experiences of NIV were best understood in the individual context of each patient and in light of their personal illness experiences. These findings make a significant contribution to the established research base, providing an alternative perspective to substantiate the quantitative evidence. It is intended that the research presented in this thesis will be of direct practical utility, helping clinicians who are supporting MND patients to ensure that patients' experiences of respiratory care and NIV use are as positive as they can be.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available