Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey.

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.

The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective.

OBJECTIVES: This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease (MND) patients with dysphagia. However, there is lack of information describing patient and carer experiences following gastrostomy insertion. The effect of gastrostomy on quality of life for these patients and their family is currently not well understood. METHODS: Retrospective qualitative exploration using semistructured interviews with patients and their informal carers to elicit in-depth descriptions of their experiences and views following gastrostomy. RESULTS: 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. 10 patients and 8 carers were interviewed, approximately 3 months following a successful gastrostomy. Participants described clinical complications, practical issues, time restrictions imposed by strict feeding regimens and psychological issues, which adversely impacted on quality of life. However, the establishment of a safe alternative route for feeding and medication, and the reduced worry over difficult meals and weight loss, were described by all as outweighing these negative impacts. Participants also described having received education/training on gastrostomy feeding both in hospital and in the community, which helped them to cope during the transition from oral to gastrostomy feeding. CONCLUSIONS: This study highlights the challenges and benefits of gastrostomy as well as the importance of education and information provision. Emphasis should be given to education before and after insertion along with support and care in the community. While the significant impact of gastrostomy on patients and carers should not be underestimated, the potential benefits were described as outweighing these concerns.

Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better?

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 was delivered to them. An anonymous postal survey was facilitated by all MND associations in Australia, in 2014, and centred on the SPIKES protocol for communicating bad news. Of the patients (n = 248, response rate 29%), 36% were dissatisfied with the delivery of the diagnosis and gave low ratings on the ability/skills of their neurologists to deliver the diagnosis. It was evident that the longer the patients spent with their neurologists during breaking such bad news, the more they were satisfied and the higher they rated the neurologists' abilities/skills. The largest significant differences between neurologists rated as having high or low skills in delivering the diagnosis were in four domains: 1) responding empathically to the feelings of patient/family; 2) sharing the information and suggesting realistic goals; 3) exploring what patient/family are expecting or hoping for; and 4) making a plan and following through. In conclusion, with over one-third of patients dissatisfied with their experience, there is room for improvement in the practice of neurologists in specified areas that could form the basis for changing practice, and the development of standards and protocols likely to have implications at the international level.

Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives.

Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014). 73 neurologists responded to this national survey (50.4% response rate). Nearly 70% of neurologists reported finding it "somewhat to very difficult" communicating the MND diagnosis, and 65% reported feeling moderate to high stress and anxiety at the delivery of diagnosis. Compared to international guidelines, areas for improvement include length of consultation, period of follow up and referral to MND associations. Two-thirds of neurologists were interested in further training to respond to patient's emotions and development of best practice guidelines. This is the first national study to provide a comprehensive insight into the process of delivering the MND diagnosis from the neurologists' perspective and to make comparisons with those of patients and the international guidelines. This study forms the basis for developing protocols to improve communication skills and alleviate the emotional burden associated with breaking bad news.