Table 1.
Major Themes by Interview Question, Their Definitions and Frequencies (n = 37)
| Theme | Definition | Number of caregivers reporting the theme, n (%) |
Total number of times the theme was reported, n (%) |
Exemplar quote | ||
|---|---|---|---|---|---|---|
| PICU, n (%) | Oncology, n (%) | PICU, n (%) | Oncology, n (%) | |||
| Question 1: “What was good about participating in the Study?” | ||||||
| Hoping to help others | Caregivers shared their experiences and reflections from a desire to benefit caregivers of similarly ill children and a few from wanting to additionally help health care professionals to work more effectively with caregivers | 22 (59.5) | 28/99 (28.3) | “Something that's for the greater good … data to use for the next family going through the process” “Hoping that what I went through may be able to help others.” |
||
| 10 (45.4) | 12 (54.5) | 12 (42.8) | 16 (57.2) | |||
| Speaking about what is hard is important | Benefits of involvement in the study reported by caregivers included helping them to clarify their feelings related to the illness experience as well as enabling them to see that they and their experiences matter to others and that they, as caregivers, had taken good actions | 17 (45.9) | 33/99 (33.3) | “It was important to me that I mattered in this experience—and that my child mattered. It was important to have a voice” “It's good to speak the truth—very difficult, but good to talk about what was so hard.” |
||
| 10 (58.8) | 7 (41.2) | 12 (36.4) | 21 (63.6) | |||
| Reflecting on being a good parent altered my thinking and my behavior | Being in the study allowed an opportunity to think back on actions and decisions made to that point and to make a conscious choice to redirect actions | 15 (40.5) | 28/99 (28.38) | “Opening an opportunity for self-reflection. I found it helpful thinking personally and objective” “I think hearing an open question that allowed me to make a definition of being a good parent and that got me thinking about being a good parent to her.” |
||
| 3 (20.) | 12 (80.) | 6 (21.4) | 22 (78.6) | |||
| Confronting the harsh reality | Being in the study helped the caregiver to realize the graveness of the ill child's clinical situation and the caregiver's inability to change it, thus releasing the caregiver from such efforts and to focus instead on the child's quality of life | 5 (13.5) | 7/99 (7.1) | “Participating was acknowledging what everyone else was already accepting” “I can't do anything about her condition, but I can love her.” |
||
| 2 (40.) | 3 (60.) | 2 (28.6) | 5 (71.4) | |||
| Understanding my perspectives and those of significant others | Study participation helped to make clear/known the views and different emotions each caregiver and partner was experiencing following the child's death | 2 (5.4) | 3/99 (3.0) | “We heal differently” “The study alters your perspective and the way you live and how you look at things.” |
||
| 0 (0) | 2 (100) | 0 (0) | 3 (100) | |||
| Question 2: “What was bad or uncomfortable about participating in the study?” | ||||||
| Being in the study was sometimes hard but not bad | Caregivers described participation as important, not harmful or difficult, but for a few, uncomfortable as memories could be evoked. | 28 (75.7) | 35/40 (87.5) | “The follow-up interview shoots you right back there. We saw how much things had changed for us for the better, but it was still hard to talk about” “It was a little painful—the first round of questions because our son was very bad at that time—but not bad or difficult.” |
||
| 17 (60.7) | 11 (39.3) | 20 (57.1) | 15 (42.9) | |||
| Disliking aspects of study design | Caregivers indicated that timing of the first interview was challenging for some, and for a few, one questionnaire was challenging. | 4 (10.8) | 5/40 (12.5) | “I did not like multiple choice questions…many were similar, so it was hard to prioritize.” “Prioritizing those answers was hard, especially since it all changed depending on the situation and your state of mind.” |
||
| 1 (25.) | 3 (75.) | 1 (20.) | 4 (80.) | |||
| Question 3: “Anything else you want the Study Team to know?” | ||||||
| Wanting the health care team to recommend the family seek psychosocial support | Caregivers recommend that the treating team inform parents going through a child's illness of the importance of taking care of self and family relationships—in part through self-reflection, and knowing where to find an expert to speak with about emotional needs | 20 (54.1) | 29 (74.4) | “When you go through this process bookend to bookend, you are laid bare to the universe—personally and in your relationships. It alters your perspective and the way you live and how you look at things” “I think that the Study Team should learn that it's good for someone to always be there with the parent going through the difficult process with their child |
||
| 7 (35) | 13 (65) | 10 (34.5) | 19 (65.5) | |||
| Liking study design and methods | Caregivers found participation to be timely, thoughtfully approached, and beneficial | 9 (24.3) | 10/39 (25.6) | “The timing is spot on that you catch parents in the throes of making tough decisions and then later down the road” “In the time between the first and second interviews my child passed away. The follow-up was important to me and made me feel like I mattered.” |
||
| 7 (77.8) | 2 (22.2) | 7 (70.) | 3 (30.) | |||
PICU, pediatric intensive care unit.