Authors (including presenting author) :
Cheung PY(1), Lai KW(1), Cheung TK(1), Tsang HC(1), To YL(1), Mok KW(2)
Affiliation :
(1)Physiotherapy Department, North District Hospital, (2)Department of Medicine, North District Hospital
Introduction :
Motor Neuron Disease (MND) is a progressive and terminal disease that results in degeneration of the motor neurons in the brain and spinal cord. As disease progresses, respiratory dysfunction and bulbar dysfunction highly increase the risk of respiratory failure.
Physiotherapy in Palliative Care Day Centre (PC Day) supports MND patients’ needs along their disease trajectory. A tailored made workshop focusing on chest physiotherapy was held for patients and their carers to understand possible respiratory dysfunction and physiotherapy modalities including assisted coughing, percussion, mechanical insufflation-exsufflation (MI-E) devices and sputum suctioning, enabling them to decide their best end-of-life care with autonomy of choice.
Objectives :
To explore the feasibility and effectiveness of a workshop based chest physiotherapy for MND patients and their carers to understand the progression of respiratory dysfunction and the chest physiotherapy modalities.
Methodology :
Telephone survey was done to evaluate patients’ and carers' experiences of the workshop, data was synthesized and interpreted.
Result & Outcome :
Specialized MND and Carers Workshop was held in March, 2024 at PC Day. There were a total of 8 participants including 4 MND cases, 3 family carers and 1 maid. The workshop lasted for 1 hour. Educational talk including possible respiratory dysfunction was introduced. Assisted coughing methods were demonstrated and carers practiced the technique with guidance and instant feedback from physiotherapist. All MND patients experienced the usage of MI-E devices and carers were guided to help their families.
The subsequent phone survey successfully contacted 3 carers. All of them agreed the workshop helped them understand their family’s disease specific to respiratory function (rated 3.6 out of 4, where 0 is strongly disagree and 4 is totally agree). They also rated 3 out of 4 that the workshop increased their confidence in helping the patient facing potential respiratory problems. Most importantly, they agreed that the workshop empowered patients and families to effectively choose physiotherapy treatment (3.3 out of 4) based on their wishes.
The workshop tailored for MND patients and families addressed their concerns and increased their confidence in facing respiratory dysfunction. Future physiotherapy workshops focusing on MND patients’ different concerns should be advocated for better patient and carer-centred care.
