Introduction Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease (MND) than for conditions such as cancer. The palliative care needs of patients and carers must be understood in order to best configure policy and health care services for this population.
Aim To explore the palliative care needs of adult patients and their informal carers living with MND, or bereaved carers of people with MND, through a systematic review of qualitative research.
Method Searches were conducted in four electronic databases (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for MND, ALS, palliative care, and a qualitative research filter. Relevant data were extracted from included papers, which were also appraised for quality. The review was conducted using Thematic Synthesis, with the papers coded in order of disease trajectory.
Results 410 papers were identified and 39 included, representing the experiences of 456 people with MND and 345 informal caregivers.
Two sets of analytical themes were identified. The first represents the disease trajectory and specific chronological points within it. The second details three sets of factors (internal, external and communicating) that impact on people’s experiences of events along the disease trajectory. Analysing the intersections of these themes highlighted which palliative care needs are most required at each stage.
The findings highlighted the need for greater communication and information provision to allow timely, informed decision making, empowering individuals to maintain control of their care in face of the unremitting loss caused by the disease.
Conclusion Despite being a life-limiting condition people with MND and their carers have limited awareness of, or involvement with, palliative care services. There are clear points in the disease trajectory where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.
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