Introduction
Category | Description | Examples |
---|---|---|
Category 1 | Life-threatening conditions for which curative treatment may be feasible but can fail. Where access to palliative care services may be necessary when treatment fails or during acute crisis, irrespective of the duration of that threat to life | Cancer; irreversible organ failure of heart, liver or kidney |
Category 2 | Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities | Cystic fibrosis; muscular dystrophy |
Category 3 | Progressive conditions without curative treatment options, in which treatment is exclusively palliative and may commonly extend over many years | Batten’s disease; mucopolysaccharidoses |
Category 4 | Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications, and likelihood of premature death | Severe cerebral palsy; multiple disabilities such as following brain or spinal cord injury |
Methods
In June 2012, the first Dutch PPCT was initiated as a 3-year pilot project at the Emma Children’s Hospital in Amsterdam. The multidisciplinary PPCT consists of five specialised paediatric nurses trained and experienced in PPC, two child life specialists, a psychologist, a social worker and a chaplain. Additionally, two paediatric oncologists and two paediatricians are committed for regular consultation. The PPCT is responsible for the coordination, continuity and quality of PPC, irrespective of the child’s place of residence. They strive to avoid acute demands for support by a proactive attitude. The support provided by the PPCT is continuous throughout the disease trajectory, including a 24-h availability and bereavement care. The PPCT bridges the gaps between home and hospital and navigates parents through the complex care processes by regular contact through phone calls, e-mails, and personal visits at home and during hospitalisations. In addition, the PPCT strengthens regular care at home by educating and coaching the other healthcare professionals involved. If regular care fails, the PPCT is competent and qualified to take over the care by providing temporary nursing care at home. For the possibility to discuss patients, maximum exchange of palliative care knowledge and optimal deployment and collaboration between team members, the PPCT has weekly multidisciplinary conferences. |
Sample
Characteristics | Number (N) | Percentages (%) |
---|---|---|
Gender parent | ||
Male | 18 | 43 |
Female | 24 | 57 |
Age of 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 of child at first interview | ||
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 |
Data collection
Data analysis
Results
Being a ‘good parent’
Theme | Quote |
---|---|
Being a good parent | Case 7: boy, 9 years, NMD. Father: When he dies, if he could think, this is the way it had to be, it sucks that I had this disease but I could not have had better parents with this disease, to go this route with me. That should be his conclusion on the last day.
Case 23: boy, 4 years, MD. Father: It takes a lot of energy to have such a child, besides that the care takes a lot of energy. You are going to think about many things, whether you like it or not. Do I mind it? No, I do not mind it because he deserves everything, he deserves the best, so I do everything for him. Yes, we give him whatever we can give him. It just takes a lot of energy, that’s all. So we are exhausted when we go to sleep in the evening, you are exhausted. But I do not mind.
|
Controlled symptoms and controlled disease | Case 21: girl, 3 years, NMD. Mother: You also want her not to be sick too often, that she has energy, because that was a problem for a long time. For that reason she started the night ventilation. And you see she has more energy and feels good and she has less pneumonia and lower respiratory tract infection, and that was absolutely the main goal. And that remains the goal, to have her as well as possible and that she can enjoy life as much as possible.
|
Case 20: girl, 6 years, MD. Mother: Last week I contacted the doctor, via a telephone consultation, because I found that she was deteriorating, she started choking, drooled a lot. And her speech was worse. So since last week, in consultation with the doctor, we started the Dexamethasone again. And again today a telephone consultation with her about how it is now and whether that is enough.
| |
A life worth living | Case 2: girl, 4 years, NMD. Father: My only concern is that she can have fun and enjoy herself and whether that is with a clothes pin or with a ball, having fun is the most important to me. Then this is feasible for her and then it is ok.
|
Case 23: boy, 4 years, MD. Mother: Yes, that he has time for as long as possible, and can be light-hearted and have fun, enjoy himself, enjoy being together. That he can enjoy the little things. That we can do the things that give him energy. And yeah, that he is having a good time.
| |
Family balance | Case 14: girl, 1 year, NMD. Father: Since the birth of Maaike, life has been like riding a large high-speed train going 400 km an hour. And it is very difficult to relax and be there for each other. Look, the most important thing is Maaike and her well-being, but we also have to be there for each other, so Machteld (mother) and I have to work to maintain our relationship, otherwise it will go wrong. But right now being there for each other is proving very difficult. And we both know that we have to do that… but well, Maaike is currently recovering from an illness, and we currently do not dare to leave her in other people’s care. So the decision is very simple, you choose Maaike. But we do know that it’s very important to go out for an evening, to go out to dinner together, to be with each other. But yeah, right now that’s not possible.
|
Case 13: boy, 5 years, MD. Mother: talking about the time that her son received chemotherapy: It was just very tough for everyone, also for Jayden (sibling, 6 years), because he had to miss us very often because he was with his grandparents. Yeah and we do not want that anymore. […] Jayden, he has to be ok, he has to come out as unscathed as possible, to come through it. To some extent this is not possible, but you need to support him in the best possible way.
|
Theme | Quote |
---|---|
Providing basic and complex care | Case 21: girl, 3 years, NMD. Mother: We are busy with everyday things, because she cannot do them herself. You have to make sure she sits one moment and lies down the next. PEG-tube care, make sure her lungs do not fill up, suctioning. Oxygen. And on and on. And also with her bowel movements, that that all goes well. But also that she develops in her own way, so you are also occupied with the standing-table or working her muscles, but also doing something creative with her. It’s is always a lot. But it is something that you are already very used to. And, of course, providing medication, that’s what you start with, and tube feeding. That kind of stuff I’m actually doing now as part of her daily care.
|
Case 17: girl, 9 years, MD. Father: The only kind of care that we have now is the home care; they will replace the tube if Tessa’s tube has fallen out, otherwise we do everything ourselves. Administering the chemotherapy, which is easy, and the medication; that’s all easy, otherwise she doesn’t really have any facilitated care, no.
| |
Organising good quality care and treatment | Case 6: boy, 2 years, NMD. Mother: There are so many things you have to think about, and that takes a lot of energy. You have to give direction to all the caregivers. And ‘PGB’ (resources) and the home care organisation, you’re also busy with them and then there is a hearing and what not. There is always something. And usually such bureaucratic matters are not settled at once. So it takes you a great deal of time to arrange everything, to make clear to people what you mean and to fill out a lot of forms or call a lot of people again and again to say please hurry up… It really is a kind of full-time job to arrange it all successfully.
|
Case 22: girl, 6 years, MD. Mother: Then we were gathering information, exploring this and that… and we discovered that the irradiation method with protons for children with brain tumours did not yet exist in the Netherlands. However, it did exist in Germany, France, Spain, Switzerland. [..] So we talked about it with the hospital. After much humming and hawing we went to Germany and did the irradiation there. We were so happy that we chose to do it there, and it didn’t bother her at all.
| |
Making sound decisions while managing risks | Case 8: boy, 6 years, NMD. Father: We don’t use day care or other child care. And that I think has to do with two reasons, firstly because Linda (mother) is very happy to be with him. And she likes to keep him close to her. And that when I am at work I have peace of mind because he is with Linda when I’m not there. And secondly because we are afraid that if he, for example, were picked up by a taxi and went to school every day, the chance of his getting a respiratory infection would absolutely be increased and that is the second reason not to do that at this time.
|
Case 23: boy, 4 years, MD. Father: You have to make a number of decisions very soon. Which road are you taking, which one you’re not. [...] It goes very quickly. You get very little time to think calmly, you don’t have time to think, you have to make choices. Yes, I found it difficult. But there is no other way. We were told there are three choices, you do nothing, you take the treatment in one particular university hospital or in this university hospital. And we were told all the pros and cons. And we finally said, ok, tomorrow we will call and let you know our choice. And we chose quality of life and quality for our son, that he had the least pain, so we opted for the short-term treatment, and we did not chose science.
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Organising a good family balance | Case 6: boy, 2 years, NMD. Father: That is really divided. At home, we do everything together, but if he gets sick, I go to the hospital with him. My wife stays with the children and takes care of everything at home and comes to the hospital every other day with one of the children or alone. And if he is really doing poorly, then she comes every day. But we need to create a bit of peace and quiet at home, with the other children.
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Case 17: girl, 9 years old, MD. Mother: And the difficulty with Tessa is, you have to explain everything, why do I have to take this and why do I get that? But on the other hand she pulls us through it each time, like okay…we have to… And also the other two, the twins, have to go to school, so luckily we still have our structure to some extent… meals on time, on time to bed. So there is a rhythm. We try to keep to that as much as possible. At half past six it should be quiet here. Then they have to sleep. Then mom and dad also have some time together.
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Aims
Controlled symptoms and controlled disease
A life worth living
Family balance
Struggling to achieve all aims
Becoming aware of the aims
Balancing the aims
Tasks
Providing basic and complex care
Organising good quality care and treatment
Making sound decisions while managing risks
Organising a good family life
Discussion
Implications for practice
Acknowledgements
Authors’ contributions
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Conception or design of the work: all authors
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Data collection: LV, MK
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Data analysis and interpretation: LV, MK, JvD
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Drafting the article: LV, MK
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Critical revision of the article: MK, ASM, DB, DC, MG, JvD
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Final approval of the version to be published: all authors