Introduction
Life-limiting disease: conditions for which are that there is no reasonable hope of a cure and from which children or young people will die. Life-threatening disease: conditions for which are that curative treatment can be feasible but can fail. |
Methods
Sample
Data collection
Data analysis
Results
Characteristics | Number (N) | Percentages (%) |
---|---|---|
Gender parent | ||
Male | 18 | 43 |
Female | 24 | 57 |
Age parenta | ||
< 30 | 2 | 5 |
30–40 | 29 | 73 |
> 40 | 9 | 23 |
Marital stage | ||
Married/cohabiting | 38 | 90 |
Divorced/not cohabiting | 4 | 10 |
Education | ||
Lowb | 5 | 12 |
Middlec | 15 | 36 |
Highd | 22 | 52 |
Age child at first interview (years) | ||
0–1 | 1e | 4e |
1–5 | 13f | 54f |
5–12 | 7 | 29 |
12–16 | 2 | 8 |
≥ 16 | 1 | 4 |
Child gender | ||
Male | 12 | 50 |
Female | 12 | 50 |
Child diagnosis | ||
Non-malignant disease (total) | 15 | 63 |
Congenital anomalies | 11 | 46 |
Neurodegenerative disease | 2 | 8 |
Metabolic disease | 2 | 8 |
Malignant disease (total) | 9 | 38 |
Central nervous system tumour | 5 | 21 |
Bone/soft tissue sarcoma | 2 | 8 |
Neuroblastoma | 1 | 4 |
Leukaemia | 1 | 4 |
Time since diagnosis | ||
0–6 months | 2 | 8 |
6–12 months | 3 | 13 |
1–2 years | 7 | 29 |
2–5 years | 8 | 33 |
> 5 years | 4 | 17 |
Palliative phase at first interview | ||
Diagnostic phase | 0 | 0 |
Phase of loss of normality | 15 | 63 |
Phase of decline | 6 | 25 |
Dying phase | 3 | 13 |
Siblings per case | ||
0 | 5 | 21 |
1 | 11 | 46 |
2 | 7 | 29 |
3 | 1 | 4 |
(Sub)Theme | Quote | |
---|---|---|
Daily anxiety of child loss | ||
1A | Daily anxiety | Case 4: boy, 10 years old, MD. Mother: You are, of course, busy with it every day. There are moments, every day, when you wonder if in the furure, Mees (son) will still be here then? And the better he is, you become more afraid of receiving bad news. Yes, you can suffer great setbacks. By now we know we will have to endure further serious setbacks again. That makes me… That thought is with me every day. |
1B | New symptoms | Case 7: boy, 9 years old, NMD. Mother: As soon as he stops coughing and his temperature rises, yes then you do not get nervous in the sense that I panic, but you surely hold your breath for… each time… Is it now? Will this be the moment that….? |
1C | Taking no risks | Case 8: boy, 6 years old, NMD. Father about life-threatening situations: That is why you are so careful with him, to prevent a respiratory tract infection, because you have seen what can happen, or worse. When the sun is shining and it is 15 degrees and you walk with a rain cover on the buggy, then people can often stared at as if you are crazy. While I’m thinking that I just want to do everything to try to prevent that moment. |
Confrontation with loss and related grief | ||
2A | Deterioration of the child | Case 7: boy, 9 years old, NMD. Father: It is very sad to literally see your child declining, while you cannot really do anything. It’s so difficult to see your child slip away before your eyes… |
2B | Losing family life | Case 4: boy, 10 years old, MD. Mother: And, meanwhile seeing Freek (sibling) playing in the water and splashing around and you are so used to both of them (the sibling and ill child) doing it all together. Yes, it is really, really tough to see that Mees cannot actually do anything anymore. And so Freek has to start playing on his own. That will soon be reality. You can see this all the time. |
2C | Loss of carefree family life | Case 14: girl, 1 year old, NMD. Father: She continues to lag behind in motor skills and development. A boy born three weeks later than Maaike (daughter) lives across the street. I’m deeply saddened to compare her with him. He recognises you, he waves at you, he already walks. These things are very painful. |
2D | Losing the future you dreamed of | Case 17: girl, 9 years old, MD. Mother: And of course you always had prospects of the future but, actually, since the moment that she became sick, that was – bang – all at once taken away. |
Ambiguity towards uncertainty | ||
3A | Uncertain prognosis | Case 8: boy, 6 years old, NMD. Father: Neither were the doctors able to say anything about that (son’s life expectancy) because there are so few children with this disease. Even when the doctors relatively know a lot, they still only have around five children under their treatment. […] I really found that difficult in the beginning. |
3B | Living with uncertainty | Case 6: boy, 2 years old, NMD. Father: A parent should not outlive their child. And that is happening right now. It can also happen to my other children, but you know that this will happen. It may be this year, it may be next year but really, no longer. This, therefore, occupies my thoughts. |
3C | Ambiguity | Case 13: boy, 5 years old, MD. Mother: That uncertainty, the fact that you know it, but that it does not happen, is an enormous burden I have to carry with me. Sometimes you almost wish it would happen, then you would have it behind you. But then, Max (son) would no longer here… So that is not possible either, it just cannot happen. |
Preservation of a meaningful parent-child relationship | ||
4A | ‘Being there’ | Case 19: boy, interview took place after the child’s death, MD. Mother: If things go really bad for your child, then you just do not want to perform the care for your child any more, you just want to be there. […] Just, purely and simply really being there for your son, cuddling him, hugging him. |
4B | Being a ‘good parent’ | Case 6: boy, 2 years old, NMD. Father: If he (son) dies, I want to be able to look in the mirror and say: “Bob, you have done your best for him”, just as I would for a healthy child. I do not have a healthy child but I want to feel that I can respect myself for having done my best. It is my child. It is my responsibility. |
Tension regarding end-of-life decisions | ||
5A | Comfort | Case 6: boy, 2 years old, NMD. Father: Once he (son) becomes ill, then it is simply a question of will he recover, or not. And if he does not recover, then you have to arrange other things. Then you need to let him die comfortably. |
5B | Looking ahead to the child’s last days | Case 14: girl, 1 year old, NMD. Mother: I want the best for Maaike (daughter), but neither do I want to lose her. I can imagine that it will be very difficult when it gets near the end…(cries) You really want the best for Maaike and perhaps that best is not to carry on treating her endlessly. At the same time, that, of course, it is part of how I feel inside because I just do not want to lose her. |
5C | Child’s ‘choice’ | Case 11: girl, interview took place after the child’s death, NMD. Father: In our experience, she (daughter) has given up by herself at a moment. And that is surely more pleasant than to say OK… We now have the idea that she actually has done well. |
Engagement with healthcare professionals | ||
6A | Positive aspect | Case 5: boy, 15 years old, MD. Father: She (homecare nurse) has done very well in my opinion. She has begun things and picked up on things, such as when we have to do things and how things are going with the contacts. So she helped push things along which I think is good - it feels good. Of course, they often deal with terminally ill children and children in this end-of-life phase, so you see too that bit of experience. And yes, every child is different, of course, but if I stand back and watch then you feel “this is OK”. It is a good feeling. |
6B | No treatment available | Case 7: boy, 9 years old, NMD. Mother: Because in my son’s case, his diagnosis, it is just symptom management and that is all. […] And that is just so strange. Because you no longer have a medical route to follow or an idea that we are going to do something… you just go home. |
6C | Learning medical language of doctor | Case 13: boy, 5 years old, MD. Father: I know our oncologist had already said that if it (cancer) comes back, things would look very bad. And, at a certain moment, you realise what that means. Because if it really looks bad, they actually mean that he (son) will not survive. |
(Sub)Theme | Quote | |
---|---|---|
Suppressing emotions | ||
1A | Keeping thoughts about child’s death out at bay | Case 13: boy, 5 years, MD. Father: You have been through a lot with the boy, but yeah, death is obviously something, that you have kept out all this time, and it is irreversible… Yes, for me that is unknown territory… That scares me. |
1B | Enjoying here-and-now | Case 15: girl, 2 years, NMD. Mother: Each day you can take it as it comes… one day at a time. And you can focus on it, but that really does not work because then your life stops. You must continue to enjoy things, to make a start on things. Then once she goes an extra day to day care. You see you have your own life too, and that is the way you should handle it. In truth, I just take one day at a time, thinking there is no time like the present. |
1C | Positive thinking | Case 19: boy, interview took place after the child’s death, MD. Father: That you once again try to continue and try to stay positive, for Jelle (son) and, of course, for yourself in order to get through the process again. |
Seeking support | ||
2A | Peers | Case 7: boy, 9 years, NMD. Mother: In one aspect what is good is that the Facebook community gives us a lot of support. When you are faced with: What could this be? Or: What kind of medication is needed?, then there is always someone who just has the same question, so other people can answer your questions. Because we, as parents, as a parent group…. with these diseases, we know a lot more than most doctors. So we can benefit from each other. But, then, yeah, the children who are facing death also come along. That is very confronting. |
2B | Distraction | Case 15: girl, 2 years, NMD. Mother: Your world gets smaller, but when I work, I can really escape from it. You just have your work, your responsibilities at your work and that gives peace, that is relaxation. That sounds very strange, but work is now relaxation. A moment away, a moment with your mind in a different place. A moment with fewer worries to think about. |
2C | Religion/Faith | Case 5: boy, 15 years, MD. Father: But we feel happily comforted, by the fact that we will see Pieter (son) again. That does not make the situation any less painful or sad, but it is a comfort in the long term. [..] How privileged I am to know that there is another way. |
Taking control | ||
3 | Taking control | Case 4: boy, MD, interview took place after the child’s death. Father about the coordination and direction of care: And they (homecare nurses) made it seem that it was all arranged in this way, but in practice, it was not crystal clear. Me and Anke (mother) felt we had to lose our temper in front of the general practitioner with the paediatric homecare organisation before they understood our boundaries, like, so you know, till here and no further. You (homecare nurses) are just going to do what the oncologist says and if you have doubts… then we will call the paediatric palliative care team now. And we did and, of course, it sounds very arrogant, but we were right. I said, well that is the first and last time that we do this. |
Adapting and accepting | ||
4A | Accepting | Case 9: girl, 3 years, NMD. Father: So, yes, at a certain moment you just have to accept that life is sometimes like that. |
4B | Adapting one’s own life | Case 17: girl, 9 years, MD. Mother: She no longer goes to after-school care because I feel something like ‘no, come home, I cannot miss you anymore’. I started to work less, to be at home with the children. |
4C | Feeling privileged | Case 8: boy, 6 years, NMD. Mother: about caring for her son: I always say I that am lucky that he does not attend school. You hear quite often, my last (child) also attends school now; I do not have that. |
4D | Acceptance in relation to one’s own life | Case 7: boy, 9 years, NMD. Father: Every time you have to cross a threshold yeah… a wheelchair is a threshold.. that little car was a whole complete drama, we had a wonderful sport utility vehicle, then you have to use that stupid wheelchair van. Every time you have to cross another threshold. And then you occasionally need a little push. |
4E | Accepting the course of the disease and the loss it brings | Case 14: girl, 1 year, NMD. Mother: It is the same with walking, it is okay that she will not walk, I lift or push her. It does not matter. It does not make her any the less for it… I still love her just the same. But I did expect that maybe one day she would crawl from A to B herself, and now you are told that that will not happen either. Every time you are forced to cross that threshold, you have to accept it yourself. So it is a process in accepting another piece of loss. |