The Palliative Care Needs of Adult Patients and Their Informal Carers Living with Motor Neuron Disease (MND), or Bereaved Carers of People with MND: a Systematic Review of Qualitative Research

To explore the palliative care needs of adult patients and their informal carers living with MND, or bereaved carers of people with MND: a systematic review of qualitative research. Searches were run 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 (aim, type and number of participants, methodology, methods of data collection, analysis, results) and checked by a second reviewer. Papers were appraised for quality although there was no a priori threshold for excluding papers. The synthesis was undertaken using Thematic Synthesis, and was reported in accordance with the ‘Enhancing transparency of the reporting the synthesis of qualitative research' (ENTREQ) statement. Papers were synthesised in order of disease trajectory: from first symptoms, diagnosis, decision-making around interventions and managing the disease, to the end of life and into bereavement. The searches identified 410 internationally based papers of which 39 were included, representing the experiences of 480 people with MND and 373 informal caregivers. Two analytical themes were determined. The first related to experiences at distinct biographical points in the MND disease trajectory through which all individuals passed. The second represented commonalities in experiences which overlay the trajectory of disease, including living a life which contained uncertainty, unremitting loss and a need to plan for the future. Palliative care was rarely discussed and was associated by patients and carers with end of life only. 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 the input of palliative care could enhance patient and carer experience of the disease, particularly at times of significant physical change.