What, how and when do families communicate about ALS? A qualitative exploration of parents’ and children’s perceptions

Figures & data

Figure 1. From codes to (sub)themes.

Table 1. Overview of themes and subthemes identified from the interviews.

Themes	Subthemes	Definitions	Example quotes – Parents	Example quotes – Children
Communication topics		ALS-related topics which are addressed in family interactions
	Giving the facts	Parents provide their children with information about the diagnosis and prognosis.	“We talked to them about this straight away, how serious it is and the statistics we heard during the diagnosis interview: an average of three years, 80 percent die within 5 years, etcetera. So we talked about this from the very beginning”. “The eldest knows that Daddy’s arms and legs are not well and that that is why they are not working properly and that his mouth is sick and that that is why he can’t talk or eat properly. She also knows that the doctor does not yet have a medicine to make him better”. “We said: ‘You know about daddy’s arm that it’s not working properly. The doctors looked at it again today and they saw that it is a disease and that daddy’s arm can’t get better. They have also seen that the disease can also spread to other parts of his body’”.	“We don’t talk about it that much, but I just know that it is a muscle disease and that your muscles fail and that things can fall out so that you can die. That your muscles actually stop working”. “In the evening they told me what it was and that he would eventually die of it and that it would take about 4 years. That he would end up in a wheelchair”.
	Acknowledging and sharing feelings	Family members acknowledge and share emotions, worries and thoughts about the ALS situation.	“They [children] came with questions or they were sad and then there is always some fear or something in that sadness and we tried to respond to that”. “If, for example, I am sad or my husband is sad, we explain why that is. We explain this very clearly and I think she understands”. “The children notice that you are sad. You don’t really want to show it, but it is what it is. That is sometimes difficult. But we also told the children ‘If you want to cry, you can cry, it doesn’t matter’”.	“Sometimes we sit together with the family and think: Where are we now? What does that mean? What do you think? How do you feel about that?” “I can talk to my sister one-on-one, so my sister is very helpful to me. We can say a lot to each other, how we are feeling and what is going on in the family and whatever happened the day before and how we feel about it”.
	Preparing for care and equipment	Parents inform their children about the required care and equipment.	“I have made it quite clear, if I can no longer talk and I choke, for example, that if I give a signal, he [son] can call 112 if he is alone here”. “There are so many aids and situations in the house. And we involve them [the children] in all of these. We let them figure it out, open it up, experiment with it, so that they also become familiar with it”. “My husband is tube-fed, so she [daughter] also knows that he has a tube in his stomach which feeds him. She also knows that he is ventilated at night. So then he gets a mask on and that is because his lungs aren’t working well. I don’t know if she knows what lungs are, but that this also has to do with the disease. There are caregivers in the house for a large part of the day to take care of him, so she knows that they are there to help daddy”.	“That’s what my mom told me: ‘If daddy is choking you should know he’s trying to breathe through his nose, but if he isn’t managing, try to tell him to breathe through his nose. And try to go a little over his back’”. “He has a ventilator now and we had to get used to putting it on him. [We learned how to do it] just from home care and from my mother. When he [father] was still able to do it himself, he explained it to me”.
	Discussing the end	Parents discuss death, dying or end of life with their children.	“We’ve indicated every time that daddy’s lungs are getting worse, so daddy’s breathing is getting worse and so it is possible that sometime daddy will go to sleep and won’t wake up again and die, because his lungs no longer work. So in that week [that the euthanasia took place], we kind of prepared them, because we knew it was coming. And the evening that he was going to die, we made a point of telling the girls to say goodbye”. “You sometimes talk about death. We are now in a phase where you’ve actually already addressed and discussed a lot of things, but to keep bringing these things up. I find that difficult sometimes. You can’t keep talking about the imminent death or what it will be like when their father is gone”.
Communication styles		The ways parents talk and interact with their children about ALS-related topics
	Open	Parents share or are willing to share information, feelings or experiences.	“It’s a very open topic. It is discussed a lot, often just in the normal course of everyday activities”. “We have said from the beginning that the children can know and see and do everything. And if they don’t want to know, that’s fine too, but we do offer them everything. If something happens or if things change or whatever, we let them know everything”. “We share everything with the children. I think we are very open about that sort of thing. And I think there’s nothing worse than withholding things”.
	Avoidant	Resistance of parents or children to talk about ALS-related topics.	“We did discuss things like a euthanasia request with our general practitioner. That’s something we’re not sharing yet”. “Because this disease is so intangible, it’s difficult to imagine that I might be in a wheelchair next year. But it could also be three years from now. And that’s a long time for children. I can’t really explain that. It may happen or it may not”. “My life is usually too busy and too hectic. They [children] tend go to their father and he just listens to them and tries to find a solution. I don’t have time for that. I'm just really too busy with everything”.	“If something is bothering me, I don’t like to tell our dad, because then I know he will cry and he can’t help having this disease”. “We don’t actually talk about ALS at all, because I don’t like it and neither does our dad”. “We are not really a talkative family. My mother is rather introvert and my father tries to stay strong for us, so we don’t really talk to each other very much”.
Communication timing		When parents open the conversation about ALS
	Waiting for changes	The conversation about ALS is opened when there are (expected) developments in the disease or care trajectory.	“I still remember that when we came out of the hospital [daughter’s name] came out of school. She saw straight away that something was wrong, you can’t keep that to yourself. So we just told her straight away”. “If something is no longer possible, I discuss it”. “If the medicines change again or something like that, I usually involve my oldest children”.	“If Mum has been to the hospital then it’s about whether things are going well or less well and then we talk about it for a while”. “Every time there is something new about him [father with ALS], he will tell us”.
	Waiting for questions	The conversation about ALS is opened at times when the children express needs or questions.	“They [children] will eventually draw their own conclusions. If everything stops at some point, then one day you will die. Yes, that’s right. And that’s the moment to say something about that”. “At some point there was the question: ‘Why can’t dad walk anymore?’. And then you actually explain how the muscles work. And then it was: ‘Will we have to go in a wheelchair too? Maybe we won’t get muscles anymore’. Then you have to tell them about that. At a certain point [name of partner]’s speech got worse, so you have to explain that too. You keep taking them with you a few steps at a time”. “We try to be honest and give concrete answers to all her questions, but not to make too much of it. So not telling more than she is asking”.	“When I ask how he got on in the hospital, he always tells everything. If I ask, he will share it”. “If my father has an appointment at the hospital and he requires a new treatment, then we are not always aware of that. Then we have to actually ask about it ourselves”.

Table 2. Family-level analysis.

Theme	Corresponding perceptions – example quotes	Conflicting perceptions – example quotes
Communication topics	Parent – “I do have conversations with the children about how they are doing”. Child – “Sometimes we sit together with the family and think: where are we now? What does that mean? What do you think? How do you feel about that?”	Parent – “We told [name of daughter], the eldest, in particular, that there are a lot of things that we don’t know, that the disease can progress differently for everyone. […] We didn’t tell then that he would die from it. We did tell her that he would gradually get worse”. Child – “They told me what it was and that he would eventually die from it and that it would take about 4 years. And that he would end up in a wheelchair”.
Communication styles	Parent – “We are very open as a family”. Child – “They also explained to me that if I had questions I could always contact them and I actually do that. […] If I have questions, I don’t look them up, I ask mom and dad”.	Parent – “Sometimes, when it has been really intense, I don’t share that. It would have to be really intense for me not to share it. I usually share everything with the oldest children”. Child 1 – “We are actually left out of a lot of things”. Child 2 – “We are not really a talkative family. My mother is rather introvert and my father tries to stay strong for us, so we don’t really talk to each other very much”.
Communication timing	Parent – “We had already prepared the children that it could be a very bad result for daddy. So we had also explained to the children what the disease was”. Child – “They [parents] had already been told that there was a high chance of ALS, so we were already a bit prepared”.	Parent – “They are involved when my husband goes [to the hospital] for an examination for the ventilator or something. […] We do have conversations about that, not so much about ALS anymore, but about the things that come with it. If the medicines change again or something like that, I usually involve my oldest children again”. Child – “If my father has another appointment at the hospital and he requires a new treatment, then we are not always aware of that. Then we have to actually ask about it ourselves”. Child 2 – “My mother said the lung specialist is coming again and your father will be fitted with a respirator, for example”.