Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey
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Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care.
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Australian family carer responses when a loved one receives a diagnosis of Motor Neurone Diseaseâ€”â€œOur life has changed foreverâ€?O'Connor, M.; Aoun, Samar; Breen, Lauren (2018)Â© 2018 John Wiley & Sons Ltd While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in ...
‘The shock of diagnosis’: Qualitative accounts from people with Motor Neurone Disease reflecting the need for more person-centred careAoun, Samar; O'Brien, M.; Breen, Lauren; O'Connor, M. (2018)© 2018 Elsevier B.V. The diagnosis of Motor Neurone Disease (MND) is devastating for people with MND (PwMND) and their families. The objective of this study is to describe the experiences of PwMND in receiving the diagnosis ...
Aoun, Samar; Breen, Lauren; Howting, Denise; Edis, R.; Oliver, D.; Henderson, R.; O'connor, M.; Harris, R.; Birks, C. (2015)Our objectives were to identify the experiences of people with MND in receiving the diagnosis and to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis ...