Burdened by obligation: Recognising the caring roles of people with motor neurone disease

Carretero S Garcés J Ródenas F . The informal caregiver’s burden of dependent people: theory and empirical review. Arch Gerontol Geriatr 2009; 49(1): 74–79.

Slocum-Gori S Hemsworth D Chan WW . Understanding compassion satisfaction, compassion fatigue and burnout: a survey of the hospice palliative care workforce. Palliat Med 2013; 27(2): 172–178.

Leroy T Fournier E Penel N . Crossed views of burden and emotional distress of cancer patients and family caregivers during palliative care. Psychooncology. Epub ahead of print 3 December 2015. DOI: 10.1002/pon.4056.

Applebaum AJ Farran CJ Marziliano AM . Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers. Palliat Support Care 2014; 12(12): 139–148.

Chio A Gauthier A Calvo A . Caregiver burden and patients’ perception of being a burden in ALS. Neurology 2005; 64(10): 1780–1782.

Connolly S Galvin M Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol 2015; 14(4): 435–442.

Foley G Timonen V Hardiman O. ‘I hate being a burden’: the patient perspective on carer burden in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. Epub ahead of print 9 February 2016. DOI: 10.3109/21678421.2016.1143512.

Foley G Timonen V Hardiman O. Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective. Qual Health Res 2014; 24(1): 67–77.

Andersen PM Abrahams S Borasio GD . EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) – revised report of an EFNS task force. Eur J Neurol 2012; 19(3): 360–375.

Bede P Oliver D Stodart J . Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry 2011; 82(4): 413–418.

Michels CTJ Boulton M Adams A . Psychometric properties of carer-reported outcome measures in palliative care: a systematic review. Palliat Med 2016; 30(1): 23–44.