Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer
Abstract
:1. Introduction
2. Methods
2.1. Study Environment
2.2. Study Participants
2.3. Data Collection
2.4. Data Analysis
3. Results
3.1. Survey Responses
3.1.1. Experiences with SW and Chaplains
3.1.2. Parent Decision-Making Support
3.1.3. Parent Decision Regret and Decision-Making Satisfaction
3.2. Parent Interviews
3.2.1. SW and Chaplain Emotional and Spiritual Support
“No, I mean she was just, she was a calming presence. You know she would just come in once and a while and check in on us, see if we needed anything.”(005)
“I mean it was just nice to have somebody who didn’t come and talk to us about you know medical things. You know just someone who would be like “how are you doing?”(005)
“The chaplain was involved while (015) was in the PICU, and would stop to chat about what was going on medically with (015), how I was feeling. Made sure I wasn’t alone…”(015)
“You know it’s like you never give up and that’s one thing that the chaplain said.”(014)
“She (the chaplain) was very specific in her prayers when she prayed for us. We said like our traditional prayers but then she made it a little more personable, too, and she used my daughter’s name and she said, keep the medical team’s hands steady when they put—you know, so she made it personal instead of just a random prayer…”(002)
3.2.2. SW and Chaplain Instrumental and Holistic Support
“… she helped me with parking, food vouchers, Ronald McDonald housing. We talked about a lot of things as far as even with my, about my other daughter. She helped me for her and with my other son. She helped also with because I’m not working, I’ve been out of work since my son got sick so she also helped me with a grant that would help me out with my bills.”(019)
“She (the SW) is helping with resources to educate [my child’s] peers at school this month.”(006)
“And, then they [the chaplain] came over and they gave her like a little prayer and she carried that prayer everywhere and she had like a little rosary.”(014)
3.2.3. SW and Chaplain Involvement in Medical Decision Making
“You know it’s like I didn’t feel like they were actually helping me, … you know it’s like you just felt so overwhelmed. You know and then for them you know just to be coming in here and giving us information of what if this happens, you know what if you, you know your daughter doesn’t make it. It’s like that’s the last thing that you want to hear.”(014)
3.2.4. SW and Chaplains as Part of the Healthcare Team
“I guess I didn’t see a whole lot of interaction between the medical and the SWs. … I guess I was never thinking … that [the SW] could help me with something that had to do with my interactions with the nurses or someone in the PICU versus just kind of helping us with more like resources.”(005)
“Yes, I think I would want them to. You know it’s like what I think they should be sharing is like, especially the way my daughter was acting, … I’m not sure what the, or how the chaplains did it. For some reason my daughter felt comfortable with them. … but I think that would be nice if they were to talk among each other and maybe it was something they said to her you know that made her feel very comfortable with them. ….”(014)
“But I had these concerns. I brought them to the social worker. The social worker brought them to the managers. They all sat with me, they all talked with me…”(002)
4. Discussion
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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All Parents (N = 24) | Parents Reporting Interactions with Social Workers (N = 16) | Parents Reporting Interactions with Chaplains (N = 18) | |
---|---|---|---|
Gender, N (%) | |||
Female | 17 (70.8) | 12 (75.0) | 14 (77.8) |
Male | 7 (29.2) | 4 (25.0) | 4 (22.2) |
Race, N (%) | |||
Asian | 1 (4.2) | 1 (6.2) | 0 (0) |
Black | 1 (4.2) | 1 (6.2) | 1 (5.6) |
White | 17 (70.8) | 10 (62.5) | 13 (72.2) |
Other | 5 (20.8) | 4 (25.0) | 4 (22.2) |
Ethnicity, N (%) | |||
Not Hispanic/Latinx | 13 (54.2) | 6 (37.5) | 10 (55.5) |
Hispanic/Latinx | 11 (45.8) | 10 (62.5) | 8 (44.4) |
Education, N (%) | |||
Elementary school | 2 (8.3) | 1 (6.2) | 1 (5.6) |
High school | 8 (33.3) | 6 (37.5) | 7 (38.9) |
College | 7 (29.2) | 6 (37.5) | 5 (27.8) |
Post-graduate | 5 (20.8) | 3 (18.8) | 3 (16.6) |
Other education | 2 (8.3) | 0 (0) | 2 (11.1) |
Marital Status, N (%) | |||
Living as a married couple | 3 (12.5) | 2 (12.5) | 3 (16.7) |
Married | 15 (62.5) | 3 (18.8) | 10 (55.5) |
Separated | 1 (4.2) | 1 (6.2) | 1 (5.6) |
Single | 5 (20.8) | 5 (31.2) | 4 (22.2) |
“Religion Is an Important Part of My Daily Life” A, N (%) | 19 (79.2) | 11 (68.8) | 14 (77.8) |
“I Consider Myself a Spiritual Person,” N (%) | 23 (95.8) | 15 (93.8) | 17 (94.4) |
Age B, mean (median, SD) | 36 (36.1, 8.1) | 35.3 (35.7, 7.6) | 35 (35.7, 8.0) |
Information social support, mean (median, SD) | 55.9 (55.4, 8.8) | 54.9 (54.2, 8.3) | 55.6 (56.1, 8.9) |
All Patients (N = 18) | Patients Whose Parents Interacted with Social Workers (N = 13) | Patients Whose Parents Interacted with Chaplains (N = 15) | |
---|---|---|---|
Sex, N (%) | |||
Female | 6 (33.3) | 3 (23.1) | 4 (26.7) |
Male | 12 (66.7) | 10 (76.9) | 11 (73.3) |
Age, mean (median, SD) | 7.4 (7.2, 4.5) | 7.6 (7.5, 4.6) | 6.6 (7.5, 5.0) |
PIM2, mean (median, SD) | 2.5 (2.7, 1.8) | 2.0 (1.1, 1.4) | 2.16 (1.1, 1.6) |
PICU LOS, mean (median, SD) | 8.1 (6, 6.6) | 8.9 (6.5, 7.4) | 8.8 (6, 6.9) |
Cancer or post HCT, N (%) | |||
Hematologic cancer | 7 (38.8) | 3 (23.1) | 4 (26.7) |
HCT | 4 (22.2) | 3 (23.1) | 4 (26.7) |
Solid tumor | 7 (38.8) | 7 (53.8) | 7 (46.6) |
Indication for PICU admission, N (%) | |||
Hemodynamic instability | 5 (27.8) | 3 (23.1) | 3 (20.0) |
Neurologic dysfunction | 4 (22.2) | 3 (23.1) | 3 (20.0) |
Postoperative care | 5 (27.8) | 4 (30.7) | 4 (26.7) |
Respiratory failure | 4 (22.2) | 3 (23.1) | 4 (26.7) |
Palliative care initiated during PICU admission, N (%) | |||
Yes | 3 (16.7) | 3 (23.1) | 3 (20.0) |
No | 15 (83.3) | 10 (76.9) | 12 (80.0) |
Question | Response | N | % |
---|---|---|---|
Did you speak with a social worker? (N = 24) | Yes | 16 | 66.7 |
No | 6 | 25.0 | |
Missing | 2 | 8.3 | |
Did the social worker help you in any way? (N = 16) | Yes | 13 | 81.3 |
No | 0 | 0 | |
Missing | 3 | 18.8 | |
How would you rate your experience with the social worker overall? (N = 16) | Excellent | 14 | 87.5 |
Very Good | 0 | 0 | |
Good | 1 | 6.3 | |
Fair | 1 | 6.3 | |
Poor | 0 | 0 | |
Missing | 0 | 0 | |
Would you ask to speak with a social worker again? (N = 16) | Yes | 13 | 81.3 |
No | 0 | 0 | |
Missing | 3 | 18.8 | |
Did you speak with a chaplain? (N = 24) | Yes | 18 | 75.0 |
No | 4 | 16.7 | |
Missing | 2 | 8.3 | |
Did the Chaplain help you in any way? (N = 18) | Yes | 13 | 72.2 |
No | 5 | 27.8 | |
Missing | 0 | 0 | |
How would you rate your experience with the chaplain overall? (N = 18) | Excellent | 9 | 50.0 |
Very Good | 1 | 5.6 | |
Good | 6 | 33.3 | |
Fair | 1 | 5.6 | |
Poor | 0 | 0 | |
Missing | 1 | 5.6 | |
Would you ask to speak with a chaplain again? (N = 18) | Yes | 15 | 83.3 |
No | 1 | 5.6 | |
Missing | 2 | 11.1 | |
What was the most important decision made for your child in the PICU? (N = 24) | Use of medical device | 8 | 13.3 |
General care plan | 4 | 16.7 | |
Use of medication | 3 | 12.5 | |
Surgical procedure | 2 | 8.3 | |
Use of radiation | 1 | 4.2 | |
Not specified | 4 | 16.7 | |
None | 2 | 8.3 | |
Was there anyone on the healthcare team who helped you talk with your doctors about the decision made for your child? (N = 24) | Yes | 16 | 66.7 |
No | 5 | 20.8 | |
Missing | 3 | 12.5 | |
Who was involved? (N = 16) A | Bedside nurse | 10 | 62.5 |
Doctor/APN B | 4 | 25.0 | |
Social worker | 3 | 18.8 | |
Chaplain | 2 | 12.5 |
All Parents | Social Worker Involved | Social Worker Not Involved | Chaplain Involved | Chaplain Not Involved | ||||||
---|---|---|---|---|---|---|---|---|---|---|
Type of Decision | N | Mean (Median, SD) | N | Mean (Median, SD) | N | Mean (Median, SD) | N | Mean (Median, SD) | N | Mean (Median, SD) |
All responses | 22 | 9.8 (0, 15.0) | 15 | 11.7 (0, 17.4) | 6 | 6.7 (5.0, 7.5) | 17 | 10.9 (0, 16.4) | 4 | 2.5 (0, 5.0) |
Use of medical device | 8 | 1.9 (0, 3.7) | 4 | 0 (0, 0) | 3 | 5 (5.0, 5.0) | 6 | 2.5 (0, 4.2) | 2 | 0 (0, 0) |
General care plan | 4 | 15 (17.5, 10.8) | 2 | 20 (20.0, 7.1) | 2 | 10 (10.0, 14.1) | 2 | 20 (20.0, 7.1) | 1 | 0 (0, NA) |
Not specified | 3 | 20 (10.0, 26.5) | 3 | 20 (10.0, 26.5) | 0 | NA | 2 | 25 (25.0, 35.4) | 1 | 10 (10.0, NA) |
Use of medication | 3 | 15 (5.0, 21.8) | 2 | 20 (20.0, 28.3) | 1 | 5.0 (5.0, NA) | 3 | 15 (5.0, 21.8) | 0 | NA |
Surgical procedure | 2 | 17.5 (17.5, 24.7) | 2 | 17.5 (17.5, 24.7) | 0 | NA | 2 | 17.5 (17.5, 24.7) | 0 | NA |
Use of radiation | 1 | 0 (0, NA) | 1 | 0 (0, NA) | 0 | NA | 1 | 0 (0, NA) | 0 | NA |
None | 1 | 0 (0, NA) | 1 | 0 (0, NA) | 0 | NA | 1 | 0 (0, NA) | 0 | NA |
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Michelson, K.N.; Arenson, M.; Charleston, E.; Clayman, M.L.; Brazg, T.; Rychlik, K.; Rosenberg, A.R.; Frader, J. Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer. Children 2022, 9, 1287. https://doi.org/10.3390/children9091287
Michelson KN, Arenson M, Charleston E, Clayman ML, Brazg T, Rychlik K, Rosenberg AR, Frader J. Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer. Children. 2022; 9(9):1287. https://doi.org/10.3390/children9091287
Chicago/Turabian StyleMichelson, Kelly N., Melanie Arenson, Elizabeth Charleston, Marla L. Clayman, Tracy Brazg, Karen Rychlik, Abby R. Rosenberg, and Joel Frader. 2022. "Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer" Children 9, no. 9: 1287. https://doi.org/10.3390/children9091287