Table 6 Theme definitions, subthemes, and exemplary quotes. themes associated with decision-making are marked with an asterisk (*)
Theme | Definition | Exemplary Quotes |
|---|---|---|
- Sub-themes | References are bracketed. | MD = physician, NP = nurse practitioner, RN = nurse, SW = social worker |
I. Values & Beliefs | R&S principles and convictions that guide a person’s behavior, choices, and interpretation of events. | |
1. Hope & Faith* - Faith in God - Faith in Medicine - Faith in Self - Optimism - Commitment to Hope/Faith | Theological virtues in the Christian tradition. Hope is an expression of trust, positivity, or desire independent of naturalistic justification. Faith may be a synonym for hope, a synonym for trust, or acceptance of a belief system (i.e. Christian gospels) [67]. | Parent: “For me, having faith means that everything will turn out okay. And therefore I don’t really stress. I think, and re-think decisions, but I don’t get stressed out about decisions, because my faith tells me everything will be okay.” MD: “Deep religious belief is difficult sometimes. It’s great sometimes, when it gives you hope and when we still have hope and there are problems and you want to just keep them going and they can just dive into that. It’s a real great grounding for those things where you still have a chance. It’s a 5% chance, but there’s still 5%, and that’s great ‘cause it makes it a lot easier, so that’s the upside. Now the downside of it is when there’s zero [percent chance] and they want you to do things, and in your best judgment that’s just not good for anybody.” |
2. God is in Control* - In God’s hands - God knows (best) - Man is not in control - God’s plan or will - God decides - God provides - God’s grace or mercy | Expressed belief that God is good and has supreme power, over human beings, worldly situations, and “natural” physical forces. | Parent: “He’s in control of everything and there’s nothing I as a person can’t do that [God’s] not in control of. So if He wants things to get better, it will get better, and if He doesn’t want it to get better, it won’t be.” MD: “The parents were very reluctant to [withdraw care] because of their religious beliefs. They were very strongly believing, quote-unquote, ‘We’ll leave it in God’s hands,’ despite the fact that we were using medicines to keep things open, and I think that was a very difficult problem for the staff versus the parents.” |
3. Voice/Presence of God* - God speaking - Divine guidance - Signs - God is with us | Belief that God communicates with people by audible voice, external signs, or internal feelings. Also, a sense that God is near. | Parent: “I took a day in my room and I was like, ‘God, I’m not leaving until you tell me what to do. I’m not moving from this spot until you tell me in my heart what I’m supposed to do.’” SW: “Mom kept saying she was praying about it, and she was waiting for an answer, but it wasn’t quite coming, and then finally, she did. She said, ‘Okay, I’m ready. I’m gonna sign [the BMT consent paperwork].’ And she said, ‘Maybe this is my sign—that everybody else is feeling positive about this.’” |
4. Miracle* - Unexplained healing - Hope for a miracle - Awe or wonder - Improbability - Miracle babies | Event that transcends the Laws of Nature by divine intervention [39]. | Parent: “[My faith] plays a tremendous part into my decision-making, and I believe God can do anything anytime he gets ready. I do believe in miracles.” MD: “I told them there were no chances for miracles, there was no chances for survival, and there were no chances for normalcy at all.” RN: “The parents looked [at] it from more of a religious standpoint. She was born, she’s living, this is a miracle, we’re going to let God take its course. We don’t want to be the ones to decide whether to remove her support.” |
5. Meaning of Suffering* - Suffering has a purpose - Good from suffering - Asking “Why?” | Ascribing purpose to pain, disease, hardship, and death, or questioning whether there is a purpose, and whether it is just. | Parent: “I understand that God has something—really, really, really has to have something—very nice for me, because after all the things that we’ve been going through (and it keeps on going), you really have to see the bright side.” MD: “We all collectively screwed up including the parents by making this happen. The nurses looking and saying, ‘That’s suffering.’ The parent saying, ‘That’s not suffering.’ It’s kind of an interesting observation. I don’t know which to do with it. It’s like looking at people’s lives—a person with CP—and saying it’s so bad that the person would rather not be alive.” |
6. Meaning of Life* - Sanctity of life - Brevity of life - Purpose of a life | Ascribing purpose or value to human life, in general or for a particular person. | Parent: “I truly believe everything in your life is meant for good and it’s just a part of the journey, and I kept saying, ‘God, I want to be able to see the beauty in this process.’” |
7. Meaning of Death* - Afterlife - Superstition | Religious doctrine or spiritual convictions about death and afterlife, as well as expressed feelings and fears. | Parent: “I look at it as, she’s in a better place and she’s one of God’s little angels.” RN: “A lot of them do suffer greatly before they die, and it’s nice if you can believe that they’re out of suffering and in a much better place, so there was a reason for their life and a reason for their death…It’s nice for the parents, too, when honestly they have some religion to fall back on because then they feel that there is also a purpose and meaning and it can help them move on as opposed to being bitter.” |
II. Practices | ||
8. Prayer* - For good outcomes - For strength - To saints - About decisions | Individual or communal petition to a divine being, saint, or spirit. | Parent: “I prayed about [my decision]. I just turned it over to God, because He’s in charge of all of this anyway. I guess that’s how I was comfortable with my decision, because I had prayed about it.” NP: “She prayed about [the decision] and I think that probably, maybe, helped her in some way, on some level make her decision.” RN: “I’d give mom the little syringe of blood and she’d say a little prayer before I put it into the little container and the little lab rack: a ‘grow, cells, grow’ prayer” |
9. Scripture | Reading, reference, or belief in a religious text. | Parent: “When I feel like I need some strength to get out of this bed to go on, to move, to help my day, I’ll grab my Bible.” |
10. Baptism | Christian rite in which a person is united with Christ in death and resurrection through either submersion in, or sprinkling with water. | Parent: “Right after I got off the phone with the wife, and knew absolutely nothing, ‘cause she was crying so much, I went back to my room, got on my computer, and sent a message off to the assistant pastor at our church and said, ‘Go baptize [our daughter].’” RN: “If they don’t want to bring in a church person or religious [person], they can even have one of the nurses do it, ‘cause a couple of the nurses who are authorized to baptize.” |
III. People & Community | ||
11. Faith Community - Friends - Church service | People bonded by shared R&S, who may pray, worship, or serve together. | Parent: “I went to [the] church that we had become a part of here. They came over with tons of food, which was just a huge blessing, because they said they didn’t want us to have to worry about trying to cook or any of that for a week.” |
12. Faith Leaders* - Pastors - Priests - Hospital chaplains - Elders & deacons | Individuals with religious or spiritual authority, who may provide spiritual teaching, guidance, and counseling, and support or perform sacred rituals. | Parent: “We made a good decision by bringing [the chaplain] in. It’s one of those conversations you have to have.” MD: “To [the chaplain], I think they were more open in how they said that they understood that the baby was going to die and they were okay with that—well, not okay, but you know. They accepted that it was going to die, but their pastor or their religion would not allow them to pull the ET tube.” RN: “They saw [the chaplain] and [Mom] was like, ‘No, no, no. He can’t come in. He can’t come! No, no.’ And I’m speculating, but I think to a lot of people [a chaplain] is indicative of ‘If I let you in, then [my child’s] going to die.’” RN: “Especially as children die, almost everyone wants a chaplain or they want some spiritual support, even if they just use it for the short-term. I don’t think I’ve ever had anyone who hasn’t requested a chaplain, honestly, at some point.” |
IV. Emotions | Emotional reactions to life experiences, grounded in R&S worldviews. | |
13. Gratitude* - Blessings | Sense of appreciation, general or specific. | Parent: “That’s the process for me—recognizing what actually happened, then what good happened in it, what can I pull from it? And then I go into gratitude.” |
14. Strength & Growth* - Stronger faith - Grow in love | Sense of positive personal development, mainly in virtues of faith, hope, and love. | Parent: “I was able to walk away and say, ‘Okay, God, I get it now. My capacity for compassion and love and joy has multiplied more than I could ever imagine.’” |
15. Anger (at God) | Animosity, often due to suffering or unanswered prayer. | Parent: “I’m like, ‘You’re not in my situation. You don’t understand. I can be mad at God if I want to be.’ But then it brought me closer to Him.” |