How the coronavirus pandemic affected the lives of people with ALS and their spouses in the UK from spouses’ perspectives: a qualitative study

Figures & data

Figure 1. Timeline of interviews and coronavirus pandemic lockdowns in England.

Table 1. Demographic information of participating spouses.

	Age group (years)	Sex	Reported caregiving duties?	Has professional caregiver	Hours caregiving by spouse per week	Relationship length (years)	Employment status	Disease duration of pwALS (years)
P1	60s	Female	Yes	No	2	11–20	Retired	2
P2	60s	Female	No	No	UH	31–40	Employed	1
P3	70s	Male	Yes	Yes	40	51–60	Retired	>6
P4	60s	Female	Yes	No	UH	31–40	Retired	5.5
P5	70s	Female	No	No	UH	51–60	Retired	1.25
P6	50s	Female	Yes	No	UH	31–40	Employed	3.33
P7	70s	Female	Yes	No	UH	41–50	Retired	5
P8	60s	Male	Yes	No	UH	31–40	Employed	3
P9	50s	Male	Yes	No	30	21–30	Employed	1.5

P = participant number. The length of relationships and ages are not given precisely to preserve anonymity. UH = under one hour per week.

Table 2. Summary of cognitive and behavioral impairment in the associated pwALS according to various screening tools.

	Met cognitive impairment cutoff score				Met behavioral impairment cutoff score
	CS 1	CS 2	CS 3	Any of the CSs	BS 1	BS 2	BS 3	BS 4	BS 5	Any of the BSs
pwALS 1							M		M
pwALS 2					◊			◊		◊
pwALS 3						◊		◊		◊
pwALS 4		◊		◊
pwALS 5
pwALS 6		◊		◊			◊	◊	◊	◊
pwALS 7	◊	◊		◊				◊		◊
pwALS 8
pwALS 9					◊	◊	◊	◊	◊	◊

pwALS = person with ALS. CS = cognitive screen. BS = behavioral screen. M = missing data. ◊ = pwALS met impairment cutoff score. The number assigned to each person with ALS is not related to the spouse participant number to preserve anonymity of participants. Cognitive and behavioral measures (the Edinburgh Cognitive and Behavioral ALS Screen (26), the ALS-Cognitive Behavioral Screen (27), the Mini-Addenbrooke’s Cognitive Examination (28), the Beaumont Behavioral Inventory (29), the ALS-Frontotemporal Dementia Questionnaire (30), and the Motor Neuron Disease Behavioral Instrument (31)) are not specifically named in the table to preserve anonymity of pwALS within the original dataset.

Table 3. Summary of identified subthemes and codes related to changes to daily life caused by the COVID-19 pandemic with illustrative quotations.

Subthemes	Codes	Example quotes
Changes due to COVID-19 pandemic	Changes to medical appointments	3.1.1.1 “The speech therapists does it on the phone.” P1
		3.1.1.2 “I mean he’s probably quite happy not maybe having to go into the hospital in a way.” P2
		3.1.1.3 “I don’t understand now why they don’t want to see her, why they want to keep doing this sort of uh sort of um Teams meetings type… it’s like they… it’s easier for them and they can get more done, I guess they’ve got a backlog but from a patient point of view, I don’t think it helps PATIENT… mentally” P9
Changes caused by an interaction between ALS and the pandemic	Losing the opportunity for experiences	3.2.1.1 “So PATIENT is missing out on golf… which is very frustrating for him because as his arm is getting weaker… it is hard for him to know that the longer it goes on for, the less likely it is for him to be able to play.” P7
		3.2.1.2 “clearly frustrating at a time when she is mobile, she’s not able to go and do the things and go on holidays and stuff that we want to.” P8
		3.2.1.3 “I feel a little bit sort of robbed… when you feel that you- your time might not be that long, it’s it’s unfortunate that you know, we could have had nice holidays and nice weekends and things.” P6
	ALS is a lockdown	3.2.2.1 “Because of PATIENT’S problems, it wasn’t as though we were leading a full life and then suddenly the pandemic and we had to alter our way of life… we just carried on as we were.” P3
		3.2.2.2 “I sort of think about being involved with the disease a lockdown itself… Now I am in a permanent lockdown because of the disease, not just the pandemic.” P1

Ellipses indicate where words have been omitted from the quotation for the purpose of representing the meaning of the quote within a limited space. P = participant number. ALS = Amyotrophic Lateral Sclerosis.

Table 4. Summary of identified subthemes and codes related to distress in spouses as a result of the coronavirus pandemic with illustrative quotations.

Subthemes	Codes	Example quotes
Anxiety	About the pwALS contracting COVID-19	4.1.1.1 “It was anxious I would say, anxious… Um well my concerns are that if he gets the virus, it will affect his breathing… it would be difficult for him to cope with.” P5
		4.1.1.2 “I probably feel more concerned than he does because I just don’t want him to get it and don’t want you know for me to get it either” P2
		4.1.1.3 “sometimes, as I've touched on before, I think I I'm more anxious about bringing something back to PATIENT.” P4
Depression	Loss of interest in doing things	4.2.1.1 “some days I have felt sitting around, even just reading a book. I have felt I need to do something to lift me – not lift me but do something to about it.” P5
		4.2.1.2 “some days, I feel less like getting up in the mornings than others.” P4
		4.2.1.3 “the garden… had just got to peek… perfection… so now I've got to do this one and… I'm less physically able to but uh I, I, yes, I think I'll, I'll get my interest back.” P4
	Sleep disturbance	4.2.2.1 “I think sometimes I I find it difficult to get off to sleep.” P6
		4.2.2.2 “I feel, when I go to bed at night I feel all calm and relaxed. And my head hits the pillow and my mind switches on. And I can still be awake still at 2am.” P1
		4.2.2.3 “I wake up more often during the night and think about things that probably won’t ever happen. So yes my sleeping pattern has been more erratic.” P5
	Negative thoughts	4.2.3.1 “I think it’s given me more time to think about our situation… that’s been the hard the hard bit… it’s just having more time to let things invade your thoughts.” P6
	No increase in depression	4.2.4.1 “I don’t think it has really made me feel more depressed.” P9
		4.2.4.2 “No, not at all. I’ve never suffered from any mental problems.” P3
Burden	Increase in burden	4.3.1.1 “there are some days where I would like someone to look after me” P5
		4.3.1.2 “from my knowledge or lack of it, yes I feel burden has changed because I don’t feel I am getting any, the information I need for now or certainly for the fast progression that this disease is likely to have.” P1
		4.3.1.3 “may be better because I won’t have to think about getting her to work and stuff… having someone else look after her and which allows me to leave.” P9
	No burden	4.3.2.1 “Um well, I don’t I don’t feel um that I'm a carer really yet. Um, so I don’t feel there’s a burden there.” P6
		4.3.2.2 “No. Not at all, just carried on the same.” P3
		4.3.2.3 “Um I don’t know if the pandemic’s changed that really” P4

Ellipses indicate where words have been omitted from the quotation for the purpose of representing the meaning of the quote within a limited space. P = participant number. pwALS = people with Amyotrophic Lateral Sclerosis.

Table 5. Summary of identified subthemes and codes related to ALS behavioral change with illustrative quotations.

Subthemes	Codes	Example quotes
Behavioral change noticed by spouse	Emotional lability	5.1.1.1 “someone doing well in a quiz program that he always watches. If they did well, I noticed he would start welling up and having to control himself.” P1
	Apathy	5.1.2.1 “He is not wanting to get involved in new things. You know, activities I have suggested… He does a lot of television watching, which is something that has definitely changed.” P1
		5.1.2.2 “like ‘I don’t see the point of going for a walk if um it’s not for a reason, to walk a dog or something’ so I thought, well OK I'll just go on my own then.” P4
	Denial or lack of insight	5.1.3.1 “PATIENT got carried away with moving as if nothing was wrong with her… She sometimes doesn’t… she forgets she has to do things differently.” P9
	More detail oriented	5.1.4.1 “And making spreadsheets of the electricity and gas meter. He has always been slightly interested in spreadsheets but in a much bigger form.” P1
Behavioral change that directly affects spouse	Abrupt communication	5.2.1.1 “When he does give advice, it sounds like quite abrupt almost criticism. I know it isn’t meant to be but it’s just his ability to communicate now does sound abrupt.” P1
	Egocentric behavior	5.2.2.1 “she is very focused on what she is doing to the extent that sometimes I’m not sure she is thinking about what anyone else what I am doing. It’s even like I am invisible sometimes.” P9

Ellipses indicate where words have been omitted from the quotation for the purpose of representing the meaning of the quote within a limited space. P = participant number.

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Data availability statement

Qualitative interview data cannot be made publicly available due to the possible risk of compromising participants’ confidentiality.