Healthcare professionals’ involvement in breaking bad news to newly diagnosed patients with motor neurodegenerative conditions: a qualitative study

Figures & data

Table 1. Participant profile.

No.	Role	Age	Sex	Years of experience
1	PD nurse specialist	59	Female	23
2	PD nurse specialist	61	Female	43
3	Speech and language therapist	41	Female	19
4	Community matron (supportive and palliative care)	61	Female	40
5	MS nurse specialist	55	Female	34
6	PD nurse specialist	50	Female	26
7	PD nurse specialist	28	Female	6
8	Clinical psychologist	35	Female	9
9	HD nurse specialist	46	Male	25
10	MND nurse specialist	53	Male	32
11	Occupational therapist	58	Female	36
12	Occupational therapist	54	Female	33
13	Clinical psychologist	37	Female	14
14	MS nurse specialist	31	Female	10
15	Physiotherapist	32	Female	10
16	Physiotherapist	30	Female	9
17	Physiotherapist	34	Female	12
18	Clinical psychologist	64	Female	41
19	MND nurse specialist	59	Female	37

Mean age: M = 47 (28–64), SD = 12.5.

Mean years of experience: M = 24 (6–43), SD = 12.7.

Table A1. Interview guide.

Question	Prompts
Can you tell me how you have come to work in this context and this line of work?	How long are you in practice? How old are you? Where were you trained?
What are your experiences with communicating with patients in this context in general?	How important do you think communication with the patient is?
How long after the patient receives their diagnosis will they usually get an appointment with you?	At this point, how have patients usually dealt with the bad news they received?
At this initial appointment you have with the patient post-diagnosis, are you involved in tasks that could be considered bad news breaking? If yes, can you talk to me about it?	Have patients fully understood their diagnosis and treatment options at this point? If not, do you provide with relevant information? What kind of conversations with patients do you consider to be difficult conversations? How do you feel when you have to provide information that could be perceived as bad news or cause distress?
How do you provide support to newly diagnosed patients with motor neurodegenerative conditions?	How do you help patients cope with their diagnosis? How do you respond to patients’ emotional reactions? Are patients willing to receive support at that time?
How do you feel about this aspect of your clinical work? (I mean breaking bad news and supporting newly diagnosed patients with motor neurodegenerative conditions)	What are your views on the difficulty of this task? What are some positive aspects of this task? How do you manage your own emotions when conversations are difficult?
What are the most challenging aspects of working with newly diagnosed patients with motor neurodegenerative diseases and engaging in breaking bad news tasks?	Do you always have enough time and a private space for your appointment with these patients? How do organisational factors affect how you provide support at this point? (either helpful or obstructive) What do you do when you feel that you cannot answer some of the patients’ questions?
What kind of education and training have you received on communication with patients?	Have you received training specifically for breaking bad news? Would be interested to receive further training on breaking bad news and supporting newly diagnosed patients?

Table A2. Coding example and breakdown of individual themes and relevant codes.

Transcript excerpt	Codes
I: So, at this initial appointment, you have with the patient, are you involved into tasks that could be considered bad news breaking?  P: Well…yes, sort of, because often, I may be asked, so 'why am I no eligible for a disease-modifying drug?', you know. And it may be because, ‘well these disease-modifying drugs tackle relapse and you have a form of MS that doesn't have relapse, therefore, that drug is of no use to you’. And sometimes that is accepted as alright, ‘well I understand now, that makes sense’ and other times that's taken as, you know, the final blow, ‘really, I 'm not ever gonna get that drug?’, you know. And it takes away that little bit of hope that someone once somewhere along the line had made the mistake and they are going to get this drug, that's difficult. I: How do you react when this happens? When they get devastated by this… P: So, erm what we have to do then is let that sink in and then see, so for the part of the disease that everybody has, the progressive part, here's where we come in, ‘whether you ‘ve got a relapse and remitting or secondary progressive, primary progressive, what we are looking at here is getting you involved in the strength and balance class, in the mindfulness class, in the fatigue management class, then’, you know, ‘yoga, pilates’. We explain that whilst there's not a drug, there are other ways to self-manage this disease.  I: So, you tell me that not all patients, when they come to see you, have fully understood their diagnosis and treatment options? P: Oh yeah, that's the case, yeah. And sometimes people come and they don't actually know what type of MS they have. I: Do they share their experiences of how they received the news with you?  P: Yeah… I think there are different categories. So, I do come across clients that come to the centre who are very angry with the way that the news has been delivered. And sometimes that's for good reason, for people that were told when they were on their own, people might be upset because a GP has told them over the phone, they ‘ve opened up a letter… I would say by far, the vast majority have had an inkling that there's something significantly wrong and that the news they get is news that they don't want to hear but they're not that surprised, they are devastated but they are not shocked. But there is a lot of anger, a lot of grief, a lot of frustration, particularly if, erm, you know I had one…. I had one young woman who's been saying for years there's been something radically wrong with her and she was then transferred to, erm, psychology, erm, for, health anxiety, and her husband -now bear in mind this is a young couple-, erm, her husband, was saying look, there's nothing wrong, you've had all the tests… And then there was a significant incident, and she was rushed into hospital and it turned out that she had multiple lesions and that she was right, there was something wrong. And, therefore, she was very mistrustful then.	Clarifying patients’ misconceptions regarding their eligibility for DMTs Explaining the nature of a diagnosis Explaining ineligibility for DMTs could be accepted by patients or completely shatter their hope Dealing with patients’ expectations who have been misinformed Giving patients time for the bad news to ‘sink in’ Providing information on what can be done for the patient to help manage both the physical and psychological impact of MS Explain the importance of self-management despite the incurable nature of MS Newly diagnosed patients might lack a basic understanding of their diagnosis Patients might express their anger towards an insensitive diagnostic experience Although devastated, most patients are not shocked because they knew there was something wrong with their health Listening to patients’ illness journeys even before receiving their diagnosis Patient mistrust caused by diagnostic delay and not having her symptoms validated for years
Theme	Codes
Dealing with the diagnostic aftermath	Listening to patient stories of bad diagnosis delivery Allowing patients to express their anger or frustration caused by the diagnostic delay Allowing patients to express their anger or frustration caused by sub-optimal diagnostic experiences Empathising with patients who had negative pre-diagnostic/diagnostic experiences De-escalating the situation - holding a middle ground between patients and doctors Acknowledging the time restrictions faced by neurologists
Unpacking the diagnosis	Newly diagnosed patients have not always understood their diagnosis Re-iterating diagnostic information Managing patient expectations regarding the goal of treatment and rehabilitation Clearing misconceptions about the nature of MNDDs Helping patients understand the impact of their diagnosis Discussing prognosis Having enough time to offer long consultations and provide adequate information
Breaking bad news as a balancing act	Being honest and realistic Being sensitive Providing positive information/Promoting a sense of hope Avoid providing false hope Assessing patients’ information needs and preferences Providing potentially distressing information regardless of patients’ readiness to receive it
Empowering patients to regain control over their health and lives	Breaking bad news to prepare patients for the future Discussing treatment options Supporting patients to make decisions and plan for the future Providing holistic assessments Signposting to other professionals/sources of support Encouraging self-management Providing emotional support

Data availability statement

The data that support the findings of this study are available from the corresponding author, EA, upon reasonable request.

Footnote 1: Although nurses are sometimes considered medical staff, for definitional clarity we use the term “non-medical” throughout the paper to describe any healthcare professionals other than doctors.

Footnote 2: There are three main types of MS, relapsing-remitting MS, secondary progressive MS and primary progressive MS. Most disease-modifying treatments reduce the number of relapses, therefore only patients with the relapsing type of MS are eligible for treatment. (De Angelis F, John NA, Brownlee WJ. Disease-modifying therapies for multiple sclerosis. BMJ. 2018 Nov 27;363.)