How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration

Abstract

Purpose

Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated.

Methods

Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes.

Results

Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of “decision-making” except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals’ communication style influences engagement in decision making.

Conclusion

PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement.

IMPLICATIONS FOR REHABILITATION

• People living with MND (plwMND) perceive they have few clinical decisions to make and viewed this process as “accepting a recommendation”, rather than “making a decision” although early gastrostomy placement is the exception with considerable deliberation evident.

• Specialist multidisciplinary clinic advice is especially helpful for plwMND without dysphagia (swallowing problems) when considering early gastrostomy placement.

• Communication impairment may be a barrier to involvement in healthcare decisions and extra support to remain engaged is required.

• Some plwMND choose not to involve others in their decisions, and patients/families with medical or scientific backgrounds are more likely to collaborate with each other outside the context of clinic appointments.

Keywords:

• Amyotrophic lateral sclerosis
• dysarthria
• gastrostomy
• motor neurone disease
• qualitative research
• shared decision making

Acknowledgements

Ms Paynter acknowledges the financial support of a MNDRA “Top Up” grant. The authors wish to thank all the participants who shared their personal stories and time for this study. We also wish to thank the staff from Calvary Health Care Bethlehem, in particular the neurology nurses and speech pathologists, for their time and effort to assist with recruiting.

Disclosure statement

The authors report no conflict of interest.

Notes

1 This paper reports on data from time point one (T1) in a longitudinal study, and communicative and cognitive deficits were expected to manifest more over the duration of the study.

Additional information

Funding

Ms Paynter is funded by a joint NHMRC/MNDRA postgraduate scholarship [#1133541]. Dr Mathers reports no relevant disclosures. Dr Gregory reports no relevant disclosures. Prof Vogel is funded by National Health and Medical Research Council, Australia Dementia Fellowship [#1135683]. A/Prof Cruice reports no relevant disclosures.