The ice-bucket challenge in 2014 was one of the things that brought the impact of living with motor neurone disease (MND) to the public's attention. MND is an illness characterised by inexorable degeneration of the motor neurons in the central nervous system.
Now new insights on carer burden in the context of this terminal illness are reported in a study undertaken by Assistant Professor of Occupational Therapy, Dr Geraldine Foley, of Trinity College Dublin. It identifies that MND patients experience carer burden too due to the obligation they feel towards family carers.
Interviews with MND patients from across Ireland about their experiences of receiving care from family members and service providers revealed that people with terminal illness can provide substantial emotional support to their family and make decisions about their care in the interest of family wellbeing.
Care preferences were often shaped by the obligation patients felt towards family.
Speaking about the significance of this research, Dr Geraldine Foley commented: "The findings from this qualitative study are important because caregiver burden in terminal illness has traditionally focused on the experiences of family carers.
"We found that terminally ill patients, in our case MND, were grateful for family support. However, patients' perceived responsibilities towards their families meant that they agreed to family preferences for symptomatic, supportive or indeed life-sustaining interventions, simply out of obligation to family. People with MND also experience emotional strain in a care-giving role."
Dr Foley's research highlights the fact that terms such as 'caregiver' and 'carer burden' are usually synonymous with the experiences of family members or other formal caregivers, rather than with the experiences of patients who have become dependent on their family.
Hence, increased attention to the caring roles that people with MND experience is required to counterbalance the already strong focus in MND research on the carer burden encountered by MND patients' families.
Furthermore healthcare professionals have an important role in assisting terminally ill patients to negotiate family obligation in the decision-making processes of care.
MND is a rapidly progressive, highly disabling and terminal neurological illness. There are approximately 300 people with MND in Ireland, which is also referred to as amyotrophic lateral sclerosis (ALS), the vast majority of who are cared for by their family at home.
The findings have just been published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration which is the official journal of the World Federation of Neurology Research Group on Motor Neuron Diseases.