Amyotrophic lateral sclerosis (ALS) health charities are central to ALS care: perspectives of Canadians affected by ALS

Figures & data

Table 1 Stated focus of selected ALS/MND health charities*.

ALS Health Charities	Stated focus	Website
ALS Society of Canada	“… we respond to the urgent unmet need for life-changing treatments by investing in high-quality research…and advocating for equitable, affordable and timely access to proven therapies. Responding to the tremendous need for current and credible ALS knowledge, awareness and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change.”	https://als.ca/
Motor Neurone Disease Association (England, Wales, and Northern Ireland)	“The MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland.”	https://www.mndassociation.org/
ALS Association (United States)	“By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.”	https://www.als.org/
Motor Neurone Disease Australia	“…the national peak body of state organizations that support those living with and impacted by Motor Neurone Disease (MND)…Our national and international networks help increase understanding of the disease and advocate for the needs of those affected. We fund world-class research for better treatments, improved care, and ultimately a cure.”	https://www.mndaustralia.org.au/
MDN Scotland	“We deliver a number of vital services for people affected by Motor Neurone Disease in Scotland, including: Grants, Counseling, Benefits Advice and Advocacy. We also invest millions of pounds into ground-breaking MND research in Scotland and across the UK… we share best practice across the global MND community… We campaign and raise awareness to help improve the lives of people affected by MND”	https://www.mndscotland.org.uk/

*examples selected from English language websites.

Table 2 Participants per ALS Talk asynchronous online focus group.

Province	People with ALS (n = 51)	Caregiver (n = 49)
Alberta	15	17
British Columbia	10	16
Ontario	17	16
Quebec/New Brunswick/ Nova Scotia	9	n/a

Figure 1 Example of ALS Talk questions prompting participant discussion of support from ALS Societies.

Table 3 Asynchronous online focus group discussion topics.

Topics	Weeks	Discussion description*
Intro		Register, ‘welcome to the focus group’, introductions
1	1-2	Communication around the time of ALS Diagnosis
2	3-4	Talking about ALS changes
3	5-6	Seeking information outside the healthcare system
4	7-8	Research participation; complementary and alternative therapies
5	9-10	Planning for future medical care
6	11-12	Conversations about death & dying
7	13-14	Improving ALS communication and support
Optional	15-16	Participation in observational research and data sharing

*We investigated participants’ experiences with and perspectives on communication with health professionals about the discussion topics.

Table 4 Participant characteristics.

Characteristics	ALS Talk Participants (n = 100)		ALS Societies Participant subset (78)
Age
18-29	3	3%	3	3.8%
30-39	4	4%	4	5.1%
40-49	14	14%	10	12.8%
50-59	25	25%	15	19.2%
60-69	31	31%	27	34.6%
70+	19	19%	17	21.8%
No response	4	4%	3	3.8%
Gender
Female	57	57%	44	56.4%
Male	39	39%	32	41.0%
No response	4	4%	3	3.8%
Role
Caregiver	49	49%	36	46.2%
PwALS	51	51%	43	55.1%
Residence
Alberta	32	32%	25	32.1%
British Columbia	26	26%	22	28.2%
Ontario	33	33%	25	32.1%
Quebec/New Brunswick	9	9%	7	9.0%
/Nova Scotia

Table 5 Theme 1: ALS societies are integral to health care.

Subthemes	Illustrative quotations
ALS clinic and Societies as a unit	‘The Clinic and the Society have played a huge part in helping us anticipate what we will need as my husband’s symptoms progress.’ (P36, caregiver)
Health system navigators	‘My husband and I had trouble navigating the support systems like homecare. The ALS society was helpful and now we have a homecare caseworker.’ (P44, PwALS)
Filling gaps	‘I think the neurologist who provided the initial diagnosis could have told me/us about anticipatory grief and suggested we get professional help to deal with it – telling us that the ALS Society has a Psychological Support Program.’ (P130, caregiver)

Table 6 Theme 2: Practical and emotional support.

Subthemes	Illustrative quotations
Support Services
Support groups	‘Attending support groups was one of the best decisions we made. At the groups you hear the stories and get a lot of good ideas and perspective from others dealing with the same problems as you. There is a lot of comfort from the relationships you develop.’ (P19, caregiver)
Equipment loans	‘The ALS Canada rep made sure that we got all of our equipment (wheelchair, commode, hospital bed, grab bar, suction machine for drooling, etc.) before it was needed, which was great.’ (P84, caregiver)
Information
Foundational	‘The Manual covers everything from the meaning of ALS to coping with ALS to disease Management to Equipment available thru ALS, and legal and financial issues.’ (P61, PwALS)
Comprehensive	‘Early on we met with our regional manager from the ALS Society. She gave an overview of their services and equipment offerings. She also told us about the Direct Funding Program and suggested we apply early.’ (P93, PwALS)
Real-life	‘I was totally surprised that they included symptoms I have dealt and not received any help with from any medical team. Some examples are frequent urgent urination, lack of ability to push out stools, feelings of being stuffed with food after eating not much, the need to hydrate to keep your mucous thin and why, laryngeal spasms, and many more.’ (P114, PwALS)
Personal connection	‘The Society rep came to our house and sat with my mom to talk. It was nice to have that in-person contact, to know that we weren’t alone. It really highlighted that ALS society was there to help.’ (P54, caregiver)

Table 7 Theme 3: Connecting people with research.

Subthemes	Illustrative quotations
Facilitating knowledge of research and emerging therapies	‘The ALS Society is great with dissemination of the latest research outcomes – webinar on latest research available on their website, good source for updates.’ (P47, PwALS)
Communicating research opportunities	‘ALS Society and the ALS Clinic should approach people personally to invite patients to participate based their interest in research studies.’ (P52, caregiver)
Fundraising and advocacy	‘One of ALS Canada’s biggest advocacy efforts is aiming to improve the [drug approval] process at both the federal and provincial levels.’ (P4, PwALS)

Data availability statement

The data that support the findings of this study are available from the corresponding author (SC) upon reasonable request.