Table 2.

Quotes

Barrier	Quote
1. Difficulties in identifying and communicating spiritual care needs.	Grief counselor, round 1. “It is not easy to unveil spirituality. I think that’s one of the barriers of the spiritual dimension, that it’s hidden in stories people tell about their experiences. That’s why it is difficult to identify, because parents themselves do not always recognize it as such.”
	Primary care professional, round 1. “The signals that parents give off are often very small and hardly noticeable, and you have to respond adequately at these moments, and sometimes, these are the only moments where that is possible. But that moment might pass quickly, and then you’ve lost your opportunity for a conversation.”
	Parent, round 2. “Spirituality… I also had to think about that word. What does that mean to me? But if you talk about what makes you happy? What brings you joy? What gives you energy? those are questions that you can answer much easier.”
2. The action-oriented approach to health care hinders the identification of spiritual care needs.	Primary care professional, round 2. “I think that the issue of nurses is that when we see a problem, we immediately want to solve it. That is more or less the core of our profession. But through the years I’ve learned that I sometimes have to sit back and listen.”
	Parent, round 1. “At medical day care, goals had to be achieved. Whereas, we thought: “Well, we are already happy if he just has a comfortable day.” (…) So it is so important the comfort of the child is being taken into account. And, I actually think that goes hand-in-hand, for me at least, with meaningfulness.”
	Grief counselor, round 2. “I think that in the medical setting, the immeasurability affects [the lack of focus on spirituality]. But life itself is not measurable. The meaning of life if not measurable, you can’t put it into tables and charts. The only thing you can do is sit down with someone and take your time.”
3. There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address.	Parent, round 1. “In the beginning [the conversations] were very confrontational for us, because […] we just were not ready for it yet. And suddenly, we had conversations about whether or not to resuscitate and things like that. So, initially we were very hesitant, and dug our heels in a little.”
	Grief counselor, round 2. “It is very dependent on how familiar the physician is with the end of life. A physician with experience, who is familiar with it, or comfortable, may realize that it doesn’t have to be an emotional burden to talk about it, and that death can have beautiful aspects as well.”
	Chaplain, round 2. “I think that’s where the bottom line is, because they don’t align properly with what’s significant for those parents, they sometimes bring up treatment restrictions when parents aren’t ready, have no idea, or too soon, or too late.”
4. Spiritual care needs are not structurally embedded in palliative care.	Primary care professional, round 1. “I have noticed that it is very dependent on the individual professional. Parents can meet someone who sees it as an important topic and who is willing to talk about it from an early stage. But, I also notice that parents very often meet doctors who find it difficult to talk about it, and therefore address it way too late.”
	Parent, round 2. “The difficulty is that professionals don’t know what has been talked about with whom. Because we’re missing a single system, where all involved can read back the documentation of conversations. (…) So if you have certain conversations, other professionals won’t know about it. That’s problematic.”
	Chaplain, round 2. “For me, here lies the heart of the problem, that we’re not part of the core team. And I also don’t know if we could fix that easily.”
5. A lack of knowledge and misconceptions about existing support.	Parent, round 1. “I came into contact with a chaplain, and initially I was very hesitant. I thought, I wouldn’t do spiritual counseling, and that, I didn’t need that at all. But once we had made an appointment, (…) I could discuss everything with her. And she also gave me the confidence that I could discuss all those difficult things that were going on in my head with her.”
	Chaplain, round 1. “There are many families who don’t know about spiritual care. [And when I talk with them about spirituality], they will look at me and say “no, I am not religious.” And then you have to explain that it doesn’t necessarily have to be related to religion.”
	Primary care professional, round 2. “For me, I’ve noticed that parents flinch when hearing the term ‘grief counselor’. And colleagues too, because they associate it with sadness and death. But the loss of the health of your child because your child has an illness, or the loss of your own freedom, they don’t really associate the term with that. So I think that we should provide more information there."
6. Seeking out spiritual support is seen as too demanding.	Chaplain, round 1. “I asked parents if they had spoken to chaplains. They all said no. And then I asked why not? Weren't there spiritual or existential questions? And I learned that they understood spiritual questions, as questions about ‘why [things happened]’…. and that is a question that you can’t handle as a parent […] it undermines your strength. […] If you were to ask parents in that situation instead: ‘What is important to you? What is of value, what is meaningful to you?’ then it would have been beneficial.”
	Primary care professional, round 2. “I see that for a lot of parents, there is a threshold that they need to overcome to go to a grief counselor or chaplain. And that threshold it quite high. And we can help them by providing information and to provide them with a network of support, but still, the threshold remains high.”
	Parent, round 2. “What prevented me [from getting support], is that you always have to go somewhere. So you have to go to a hospital or you have to go to a practice…. But parents generally want to focus on other things; taking care of their child, but also doing nice things, making memories.”