Needs and preferences for psychological interventions of people with motor neuron disease

Figures & data

Table 1 Demographic characteristics of participants.

	pwMND (N = 15)	Caregivers (N = 10)	Healthcare professionals (N = 12)
Sex
Male	9	3	3
Female	6	7	9
Age
30–49	0	1	8
50–64	7	3	4
65+	8	6	0
Mean age (SD)	61.4 (SD 5.94)	64.7 (SD 11.94)	48.0 (SD 8.86)
Ethnicity
White British	15	10	11
Other	0	0	1
Education
GCSE/O levels	1	2	0
A level	1	1	0
Bachelor’s degree	8	5	7
Master’s degree	5	1	3
Doctorate	0	1	0
Employment status
Paid work	3	2	12 (MND Nurse specialists n = 6, clinical consultants n = 2, speech and language therapists n = 2, counselor n = 1, physiotherapist n = 1)
No paid work	4	2	–
Voluntary	2	3	–
Retired (due to age)	6	3	–
Marital status			–
Single	1	0	n/a
Married	12	5	n/a
Widowed	0	5	n/a
Divorced/separated	2	0	n/a
Diagnosis of pwMND/person cared for
ALS	10	9	n/a
Primary lateral sclerosis	4	0	n/a
Progressive bulbar Palsy	1	0	n/a
Progressive muscular atrophy	0	1^a	n/a
Mean no. of years working with pwMND	n/a	n/a	10.4 (SD 7.37)
Mean no. of months caring for a person with MND	n/a	26.5 (SD 12.97)	n/a
Mean no. of hours per week caregiving	n/a	41.8 (SD 38.10)	n/a

SD: standard deviation.

a A former carer of a person with MND also had a recent diagnosis of progressive muscular atrophy, but preferred to answer the questions from the perspective of a carer as they considered themselves to be too early in the disease course to comment from the perspective of a person with MND.

Table 2 A summary of the identified themes, sub-themes, and example quotes.

Themes		Quotes
Unfamiliar territory	(1a) Lack of MND awareness	“It can be quite an isolating disease, people don’t know much about it, people don't know what to say. It's not like cancer that lots of people have said oh, you know, my such-and-such relative had this. There's a lack of knowledge about it.” (Person with MND, 014, F, 67 years) “I do think it has the kind of stigma that people don’t want to talk about it”. (Healthcare professional, 054, F, 48 years)
	(1b) Value placed on healthcare professionals’ knowledge	“…any therapist who goes in needs to have a basic understanding of what is available to a motor neuron disease patient to just help them”. (Caregiver, 029, F, 74 years)
	(1c) Finding the right time	“You might find that people turn you down in the first instance. It’s being able to keep plugging away, and also, sort of, try to be there at the right place, right time, really.” (Person with MND, 026, M, 63 years)
	(1d) Value placed on testimonies from others with MND	“For me recommendations and testimonials from people who've already done it and seen what their views were and that it helped them, then I would think it's worth a go for me”. (Person with MND, 014, F, 67 years)
	(1e) Difficulties accepting help	“I just think men are difficult to work with in my experience. You know they don’t like to talk about the problems, they like people to think they’re very brave, they don’t complain so much you know”. (Caregiver, 030, F, 74 years) “MND patients, I find a lot of them have problems with accepting it. We see them right from the beginning, they're quite in denial. They'll be, like, oh, at least they're not as bad as so-and-so, trust me. They don't want to read the literature and things like that”. (Healthcare professional, 015, M, 46 years)
	(1f) Navigating a new identity	“And seeing yourself as a disabled person it's a real wakeup, as I say, you just get a new identity really”. (Person with MND, 002, F, 60 years) “I live with MND. That’s how I use that. People say “You got MND.” So I say “No. I live with MND” (Person with MND, 003, M, 75 years)
A series of losses	(2a) Feelings of loss (loss of function, independence, hope, relationships, identity)	“It’s very hard to have people doing things for you, you know and of course the loss of dignity is a big thing as well. You have to have help going to the toilet and getting washed and things. That’s a huge loss of dignity…”. (Caregiver, 030, F, 74 years) “…just the simple loss of opportunity, things that may not be fulfilled, things that have been put in towards retirement which will never happen”. (Healthcare professional, 016, M, 44 years) “I think also we found that some of our friends have fallen away. We talk about loss”. (Caregiver, 023, F, 74 years)
	(2b) Psychological impact of losses (anger, frustration, hopelessness, embarrassment)	“…they get angry and they find it hard to discuss, but they do when you get to know them, they get angry because they see people who have, they would say, frankly, abused their health, and, and they're not getting MND”. (Healthcare professional, 046, F, 60 years) “They find it embarrassing even if it's only in front of family. I mean, there are very few of us, as much as we love our nearest and dearest, would want them to be wiping our, you know, spit off our chins”. (Healthcare professional, 040, F, 64 years)
	(2c) Coping strategies (denial & avoidance)	“MND patients, I find a lot of them have problems with accepting it. We see them right from the beginning, they're quite in denial. They'll be, like, oh, at least they're not as bad as so-and-so, trust me. They don't want to read the literature and things like that”. (Healthcare professional, 015, M, 46 years) “So some people have said, I don't want to meet with other people with MND, I don't want to see what I'm going to become. And that's the risk, isn't it, if you meet people with the same illness who are further on, and you think, I wish I hadn't seen that”. (Healthcare professional, 034, F, 31 years)
	(2d) Need to empower patients	“It might be helpful, not important but helpful to do this in order to have the armoury/weaponry and tools to go through this journey”. (Caregiver, 004, F, 77 years) “Getting the encouragement to do the goals and if they’re practically possible to go for it”. (Person with MND, 002, F, 60 years) “To me, it’s really important that the person with MND is able to make their own choices and their own decisions, so that they feel free to say how they feel”. (Caregiver, 048, F, 59 years)
	(2e) Building on positive attitudes	“Trying to put things back into the here and now as much as possible, is to try and find value in the current experience and not to see the absence of what they once had in terms of what they called success.” (Healthcare professional, 016, M, 44 years) “It's important to find out what their interests and things like that are so then we can build them up for the future”. (Healthcare professional, 034, F, 31 years)
Variability and meeting individual needs	(3a) Variability and uncertainty	“…you’ve obviously got two people here who go through the same disease but at the beginning of diagnosis time we both had quite a different attitude and perhaps different feelings”. (Person with MND, 021, M, 67 years) “It’s such a peculiar disease and it doesn’t follow a set course. What’s good for one person might not be good for another”. (Caregiver, 027, F, 56) “…you know, their personalities might change or their decision making’s changing as well”. (Healthcare professional, 054, F, 48 years) “We just don’t know with MND how things are going to progress, how quickly, how slowly and you've no idea, you know, what the future holds for you”. (Person with MND, 014, F, 67 years)
	(3b) Practicalities in meeting varied needs	“It’s sometimes difficult, you know, to get out the house because people are that much equipment to bring. There are so many people have ventilation. So they have lots of equipment, as I say, so that would be one reason why people couldn't get to clinic because they were carrying ventilation”. (Healthcare professional, 010, F, 44 years) “There are a lot of people who are not computer literate, you know there are people who can’t program a television recording system. You know, you want to be careful you don’t disenfranchize those…” (Person with MND, 032, M, 74 years) “For me now, getting to hospital is very difficult, so having a therapist coming home would be very useful”. (Person with MND, 026, M, 63 years) “And I think if they’ve got lots of appointments going on, which they probably have, anything, text reminders, and written information, I think is very useful”. (Caregiver, 048, F, 59 years)
	(3c) Being inclusive of those with communication difficulties	“Physical problems, for example communication problems, if they can’t physically communicate then that really going to be a big barrier”. (Healthcare professional, 054, F, 48 years)
	(3d) Previous experiences	“He had some counseling from the hospice but he hated it he found it intrusive”. (Caregiver, 029, F, 74 years) “I think that the idea of talking to try and help them to do the things they want to do is pie in the sky because I think it’s very rare that they can do anything”. (Caregiver, 029, F, 74 years).
Informal support	(4a) Peer support	“You do learn an awful lot from other people about how they cope with it and, you know, what information they found out and sharing that is often useful”. (Person with MND, 025, F, 61 years) “So some people have said, I don't want to meet with other people with MND, I don't want to see what I'm going to become. And that's the risk, isn't it, if you meet people with the same illness who are further on, and you think, I wish I hadn't seen that”. (Healthcare professional, 020, F, 45 years) “Some people absolutely love it, for everything to be online and everything to be under their control and their time frame as well so they can choose when to dip in and out of the forum when they’re feeling up to it”. (Person with MND, 002, F, 60 years)
	(4b) Caregivers and family	“Well I think for therapy in general I think it’s important to bring the significant other on board with it, they don’t necessarily need to be part of it but actually I think one of the biggest influences on habits and communication and getting involved with stuff are family or significant others and if they buy into it seems to make it a bit easier for all”. (Healthcare professional, 038, M, 53 years) “…for patients who have familial MND. And it’s the concern for their children. If they, you know, have familial MND and they’ve already got children.” (Healthcare professional, 010, F, 44 years) “MND doesn’t just affect the person it affects the entire family”. (Caregiver, 027, F, 56 years)
	(4c) Caregiver burden	“Sometimes all patients can be quite selfish in terms of, you know, look at me. I’ve decided to do this thing and, you know, not quite realize it’s trampling over their caregiver’s plan to be a person or what have you…”. (Caregiver, 035, M, 37 years) “Well, I think that is a huge point about being a burden, especially with the men again. I think you know they want to look after their families and they want to be the one to do things and they do, they hate being a burden”. (Caregiver, 030, F, 74 years)

Table 3 Challenges and opportunities for engagement in psychological interventions, as well as implications for psychological interventions.

Challenges/opportunities for engagement in psychological interventions	Implications for psychological interventions
(1a) Lack of MND awareness	Provide information about MND and refer patients, families and caregivers to MND resources (i.e. online forums and websites) to help expand their understanding and awareness of the disease.
(1b) Value placed on healthcare professionals’ knowledge	Provide MND-specific training to therapists on physical, communication, cognitive and psychological difficulties that pwMND may experience. However, be aware that finding time for staff to attend training and put learning into practice may be another potential barrier (35). Give therapists the opportunity to familiarize themselves with equipment (e.g. communication devices) used by people with MND before engaging them in psychological interventions.
(1c) Finding the right time	Make MND healthcare professionals aware of the fact that refusals to engage in psychological interventions may change as an individual’s circumstances change, particularly for men.
(1d) Value placed on testimonies from others with MND	Provide testimonies of others who have undergone psychological interventions and how/why they found it helpful.
(1e) Difficulties accepting help	Make MND healthcare professionals aware of the fact that men in particular may refuse to engage in psychological interventions. Gently explore the consequences of refusing to accept help in terms of the costs and benefits with respect to quality of life.
(1f) Navigating a new identity	Explore issues around identity with the person with MND and what living with MND means to them as a person.
(2a) Feelings of loss (loss of function, independence, hope, relationships, identity)	Acknowledge, validate and normalize the series of losses a person with MND may experience.
(2b) Psychological impact of losses (anger, frustration, hopelessness, embarrassment)	Acknowledge, validate, and normalize the thoughts, emotions and physical sensations a person may experience as a result of the losses. Gently explore how the person with MND responds to these internal experiences (i.e. what they do), and whether this is helping to improve their quality of life in the long-term.
(2c) Coping strategies (denial & avoidance)	Explore current coping strategies with the person with MND, the consequences of these strategies (i.e. the costs and benefits of them), and whether they could be doing anything differently. Emphasize the person with MND learning new skills to manage difficult thoughts, emotions and physical sensations in order that they can engage in the things that are important and that matter to them (i.e. their values) throughout the psychological intervention.
(2d) Need to empower patients	Emphasize that the person with MND always has a choice about whether to engage in particular exercises or discussions in order to reinforce perceptions of autonomy.
(2e) Building on positive attitudes	Help the person with MND to clarify what is important to them (i.e. their values). Emphasize living and finding value in the here and now through mindfulness exercises (31–33). Incorporate strategies for realistic goal setting (in service of personally meaningful values) in the psychological intervention and illustrate how these can be adapted as the disease progresses.
(3a) Variability and uncertainty	Discuss how to adapt sessions to the needs of the individual with MND at the onset of the intervention and then customize treatment delivery accordingly. Compensate for difficulties using standard therapeutic procedures. Address the uncertainties a person may experience due to the variability seen in MND.
(3b) Practicalities	Offer flexibility in session delivery (e.g. videoconferencing or at home). Allow for cancelations due to hospital appointments and illness. Discuss with the person what practical steps could be taken to support them engaging in therapy (e.g. providing visual prompts or session reminders).
(3c) Being inclusive of those with communication difficulties	Be aware of a person’s difficulties with speech and allow for a slower pace of the sessions where necessary.
(3d) Previous experiences	Be aware of a person’s previous experiences of psychological interventions and acknowledge what they found did and didn’t work for them.
(4a) Peer support	Offer opportunities for and the choice to engage in peer support in the form of an online forum or online peer-support group.
(4b) Caregivers and family	Ask the person with MND if they would like to invite a carer or family member to engage in some sessions, though being aware of the additional burden this may place on caregivers.
(4c) Caregiver burden	Incorporate supplemental exercises that caregivers could utilize in addition to pwMND (or offer caregivers individual sessions in their own right).

Note: Subthemes in Table 2 correspond with those presented in Table 3.