Introduction
Methods
Sample
Data collection
Data analysis
Results
n (%) | |
---|---|
Parent characteristics (n = 20) | |
Female | 15 (75) |
Age | |
30–40 years | 9 (45) |
40–50 years | 8 (40) |
> 50 years | 3 (15) |
Marital stage | |
Married/cohabiting | 18 (90) |
Not cohabiting | 2 (10) |
Caucasian race | 20 (100) |
Level of education | |
Secondary school | 1 (5) |
Vocational education | 4 (20) |
High school | 6 (30) |
University | 9 (45) |
Religion | |
Protestant | 11 (55) |
None | 9 (45) |
Child characteristics (n = 17) | |
Female | 5 (30) |
Deceased | |
Total | 6 (35) |
< 2000 | 1 (17) |
2000–2010 | 1 (17) |
> 2010 | 4 (67) |
Age at death/at interview | |
< 1 year | 3 (18) |
1–5 years | 6 (35) |
5–12 years | 5 (29) |
> 12 years | 3 (18) |
Diagnosis | |
Chromosomal anomaly | 7 (41) |
Congenital heart disease | 4 (24) |
CNS tumor | 2 (12) |
Cystic fibrosis | 1 (6) |
Neuromuscular disease | 1 (6) |
Epilepsy syndrome | 1 (6) |
Perinatal asphyxia | 1 (6) |
Age at diagnosis | |
< 1 year | 12 (71) |
1–5 years | 3 (18) |
> 5 years | 2 (12) |
Attitudes towards the future
(sub)Theme | Quote |
---|---|
Focus on the near future | |
1A Initial orientation on the near future | R20: mother of a girl, 6 years, MD. “Our live was really divided into periods until the next MRI. I could not look further than the next scan, no way. I got angry or anxious when we got invitations for events scheduled after that period.” |
1B Preparatory actions show further perspectives | R3: mother of a boy, 3 months, NMD. “Not to prepare everything in detail, but I bought clothes for him to wear in the coffin, you know?... And then I put them away in a bag over there.” |
Intertwinement of future perspectives with experiences from the present and the past | |
2A Future perspectives are related to the current situation | R7: father of a boy, 4 years, NDM. “He already survived his own prognosis. We are going to help him stay the longest-living infant with this syndrome.” |
2B Prognostic certainty stimulates thinking about worst-case scenarios further away | R13: mother of a girl, 1 year, NMD. “The doctors are just really sad about her future. We distinctly discussed how we will…. what we will do when she loses consciousness [during an event at home]. Shall we call the doctor, or will take her in our arms, where she will pass away?” |
2C Future perspectives are related to experiences from the past | R6: mother of a boy, 4 years, NMD. “We proved with our other child [parents lost another child with the same diagnosis after withdrawal of life sustaining treatment], grimly said, that we are capable of taking a child off the ventilator. That somehow grants you the confidence that, even though you never thought you would be capable of doing that, you might be able to do it again.” |
2D Prior decision making influences attitude towards the future | R1: mother of a boy, 1 year, NMD. “If we […] would have known everything, that it would be so tough, we would have […] not carried to term. In hindsight. But at that time you did not know. But it is so beautiful to know him. You would not have known that it could be so beautiful.. So he keeps you going… there is nothing else to do.. |
2E Life views connect past, present and future | R13: mother of a girl, 1 year, NMD. “This we really know…that eventually her life is simply in God’s hands and He knows. He knew her beginning and He knows her end, her life’s end. And we hope it [her life] will not end sometime soon.” |
Future perspectives range from a disease-related orientation to a value-based orientation | |
3A An initial practical, disease-related orientation | R11: mother of a boy, 6 years, NDM. “On the one hand there is this question: ‘how long will his future be?’ and on the other hand ‘how are we going to fulfill his care needs?” |
3B More existential thoughts emerge in deeper conversations | R13: mother of a girl, 1 year, NMD. “Yes, I would really love to see a little bit of development, just a little bit of interaction [with her daughter], but actually I do not really hope for it anymore, because I do not believe it will happen. It is more like a wish.” |
3C Defining future goals of care needs deliberation | R11: mother of a boy, 6 years, NDM. “Uhm, well… Look, in the ideal situation we would prevent big problems, more big problems, in the future. But if you are talking about cure [as opposed to care], this is a difficult thing, because you cannot foresee what will cross your path in the future.” |
3D Discussing treatment limitations touches underlying values | R5: mother of a boy, 3 years, NMD. ‘Unjustly, the question whether it has been enough or whether we should continue treatment is asked about him very often…Other children are very ill as well and sometimes unhappy, but no one dares to ask this question in their case…While with [her son] it is asked all the time… That is quite confrontational… very painful…. (R5) |
No sharing without caring | |
4A Need for acknowledgment challenging parental context | R10: father of a girl, 7 years, NMD. “I am always feeling ill and on the move, and you can just see that I will not make it. You can see how my engine is starting to fail…”(R10) |
4B Need for acknowledgment growing parental expertise | R7: father of a boy, 4 years, NMD. “When I call the neurologist to say it is not OK with my son’s epilepsy, than he will take some action. He will not ask any further questions, but trusts me in my observation the epilepsy is getting worse and something has to be done about it. |
4C Attention to perspectives outside the medical domain | R5: mother of a boy, 3 years, NMD. “I would appreciate it [to discuss matters out of the medical domain]. His emotional wellbeing and his development are part of who he is. |
4D Awareness of the child’s identity | R5: mother of a boy, 3 years, NMD. “He is not just a respiratory infection, he is simply a human being.” |
4E Need for consistency towards shared care goals | R2: mother of a boy, 3 months, NMD. “I believe that as long as the shared goal is being put forward, you are already halfway there. Then you’ll have an understanding of each other [parents and clinicians], respect each other and appreciate each other deeply.” |