Background: People with motor neurone disease access healthcare services from disease onset to end-of-life care, but there has been paucity of research on how people with motor neurone disease understand and use healthcare services.
Aim: To identify key psycho-social processes that underpin how people with motor neurone disease engage with healthcare services.
Design: Grounded theory approach comprising in-depth qualitative interviews was used in this study. Data were collected and analysed using open, axial and selective coding procedures.
Setting/participants: A total of 34 people with motor neurone disease were recruited from the Irish motor neurone disease population-based register.
Results: We identified that control, reassurance, resignation and trust are key variables that shape how people with motor neurone disease engage with healthcare services. Participants exerted control in care to cope with loss. Most participants were resigned to death and sought reassurances from healthcare professionals about end-of-life care. Participants questioned the benefit of life-sustaining interventions in motor neurone disease and few of them associated life-sustaining interventions with palliative care. Participants trusted healthcare professionals who reassured them about their care and who were attuned to how they were coming to terms with loss.
Conclusion: This study identified new and important aspects of control, trust and reassurance which shed light on how people with motor neurone disease engage with healthcare professionals and approach end-of-life care. People with motor neurone disease exert control in care and meaningful relationships with healthcare professionals are important to them. Some people with motor neurone disease prefer to die without life-sustaining interventions.
Keywords: Motor neurone disease; amyotrophic lateral sclerosis; decision-making; palliative care; qualitative research; terminal care.