“It Helped Me Understand What I Was Walking into:” Youth and Caregiver Acceptability and Satisfaction with a Psychological Perioperative Pain Management Intervention
Abstract
1. Background
2. Methods
2.1. Design
2.2. Intervention
2.3. Participants
2.4. Measures
2.4.1. Pain Intensity Numeric Rating Scale
2.4.2. Pain Catastrophizing Scale
2.4.3. Patient-Reported Outcomes Measurement Information System (PROMIS) Measures
2.4.4. Patient and Caregiver Satisfaction Questionnaire
2.4.5. Semi-Structured Interview
2.5. Procedure
2.6. Analytic Approach
2.6.1. Qualitative Analyses
2.6.2. Quantitative Analyses
2.6.3. Mixed Methods Integration
3. Results
3.1. Participants and Intervention Delivery Characteristics
3.2. Qualitative Results
3.2.1. Category One: Developing Support and a Sense of Preparedness for Surgery
“It was straight to the point; it was easy to read. Yeah. So definitely [youth] went through, and I went through it too.”(Caregiver of 14-year-old)
“We’re able to still have the slides, it shows you what to review on our own.”(15-year-old youth)
“We didn’t necessarily go back and reference it. But um building it together really helps because then it was kind of solidified and cemented for us.”(Caregiver of 14-year-old)
“I think it’s important because as a parent, you want to know what the child is going [through], so it definitely prepares you. And as a child, it gives you the information in regards to surgery…”(Caregiver of a 14-year-old)
“[The intervention] helped me understand what I was walking into, properly preparing me for the upcoming surgery and when the date came, I felt much more comfortable than I would if I hadn’t gone to the sessions.”[Open-text response from 16-year-old Youth]
“…Some of my information did [overlap], but I think it’s good to hear twice though, like, even if it was because some of them…I forget some things and then see it again. And then I heard [the therapist] before like, but I think I, it wasn’t repetitive or anything. …[The therapist] was telling me good stuff. Like, all good information I could use.”(15-year-old youth)
“I liked that the sessions reinforced things we already knew and gave us new strategies. It allowed my child to be reminded of the strategies.”(Open-text response from a Caregiver of a 14-year-old)
“I found that helpful [at the] beginning so that I was prepared with things that I could use and do to try and take her mind off the pain and stuff.”(Caregiver of 16-year-old)
“I find the most helpful five, four, three, two, one. And um distractions.”(14-year-old youth)
“…[The therapist] did um two things that I found were really helpful. They were both just kind of, like, closed my eyes and just listened to [the therapist’s] voice. And [the therapist] said, oh, just like, calm your toes down, and then [the therapist] went all the way up, and then it was just like finding your happy place. I found those were incredibly helpful.”(16-year-old youth)
“In regards to the different pain levels and things that we could do to help [youth], especially when she was after the surgery. That was really helpful.”(Caregiver of a 14-year-old)
“Distraction is a big thing for her. You get her talking about something that she likes, and then all of a sudden, pain. She talked for 20 min, still being in pain, but at least sidetracked those moments.”(Caregiver of a 16-year-old)
“What we did find super, super helpful is not only pain, but we’ve been using them for frustration levels and coping with the immobility that we have. Because [youth] still has not been walking. And it’s very hard at 14 to um lose your independence. And so, most of our biggest challenges had been around that frustration. And we’ve actually used the coping strategies, so so much around that.”(Caregiver of 14-year-old youth)
“I would. I would recommend it to those people who feel like they need it. Because some people might not need the same things everybody else needs.”(13-year-old youth)
“I would definitely recommend the program to other parents and patients, letting them know what to expect. Um. Especially for like if they have a child who’s had pain for a long time, like my child.”(Caregiver of a 14-year-old)
3.2.2. Category Two: Connection Matters Between Families and the Team
“I think when I was really stressed, I would just be able to lean on my parents and help them talk me out of bad situations.”(16-year-old youth)
“I liked being with my mom constantly. I liked it. Plus, the surgery is more… it’s affecting the both of us anyway, so both need to be there because she has 8 h to wait in a waiting room, so might as well just sit in and learn some skills.”(14-year-old youth)
“[The therapist] sometimes talked to me for a couple of minutes in the beginning or both of us in the beginning, and then talk to [youth] and then kind of do a little recap at the end with me to see if I had any questions or if [the therapist] had questions for me or whatever or if there was something that [youth] maybe wanted to share with me but couldn’t. I like the way that was set up.”(Caregiver of a 16-year-old)
“I found that as parents we were unsure of the advice. Some of the calls excluded the parents—which we understand—but we felt we didn’t have a complete understanding of what was happening.”(Open-text response from the caregiver of a 15-year-old)
“[Youth] has really bad social anxieties, like, all the social anxiety. So sometimes doing these meetings, that’s one of the reasons why she didn’t want to do this one is it’s a lot for her. So they were all really hard for her to do initially.”(Caregiver of 16-year-old youth)
“I like how it was like there was a certain like, like it wasn’t…rushed. …[The therapist] was taking her time to explain and like make sure that I’m understanding and all that like it wasn’t like brushed off or something.”(15-year-old youth)
“It felt really helpful at the time. It really did. I like talking to [the therapist]. … I don’t remember it all, but I know it was like, oh, I’m glad [the therapist] told me that, or, I’m glad [the therapist] mentioned that…”(16-year-old youth)
“I think that um it was super helpful for [youth] to talk about some of the things she was worried about, because [Therapist] was really great at letting us know who we should tell, who it was important to let know. And then [the therapist] also set up like child life specialists for us and some other things like that, that we wouldn’t necessarily have known um that we were able to access.”(Caregiver of 14-year-old youth)
“…[Therapist] gave info to the other departments about [youth’s] specific worries and helped me know which departments dealt with what issues.”(Open-text response from the caregiver of a 14-year-old)
3.2.3. Category Three: Personal Characteristics May Impact Intervention Use
“I remember being sent [the slides]. But I always forgot to get them…when I had my surgery. It would have been easier if you just gave like a printed copy to the parents…”(13-year-old youth)
“It’s still really hard for her to remember in the moment to pull [the strategies] out. But if we remind her, then she knows the skills and she knows the tools.”(Caregiver of a 14-year-old)
“But [the medical team] also really encouraged her to try the [strategies] that she thought wouldn’t work. …she just didn’t want to try other things. And when she’s in pain, she’ll tell you she doesn’t want to use the distraction either.”(Caregiver of a 16-year-old)
“My child is very resistant to new ideas and she doesn’t believe any will work.”(Caregiver of a 16-year-old)
“I didn’t realize how much hearing the term pain management over and over again back in November and December for myself was very triggering. [Child] was not in pain, so she never had pain.”(Caregiver of a 16-year-old)
“I didn’t have a whole lot of fears or worries going into [the surgery]. We knew for a long time it was coming. My fears and anxieties more came when I first saw her after the surgery and saw how much pain she was in. I don’t think anything could have really prepared me for the amount of pain that she was going to get.”(Caregiver of a 16-year-old)
3.2.4. Theme Four: The Need for Adaptable Content and Delivery
“I think, too, though, it was for general pain, it wasn’t specifically related to my surgery. So … it was…I know it’s really hard to be really specific, to have one person for everything, but … that would have been more helpful.”(16-year-old youth)
“A couple of them that were um maybe not they were maybe geared to younger kids instead of older kids.”(Caregiver of a 14-year-old)
“…Because it was like it was just right after the surgery, you would want some type of like, “oh, like, what am I supposed to feel this way, this way?” Because after you’re healing on your own, like, you’re just like, like, you’re doing by yourself, if you’re just waiting two weeks, like that two weeks is like really crucial, you know? So it’s like, I’m by myself for those two weeks. It would be better is they were here, like the week right after.”(Caregiver and 15-year-old youth)
“Um I feel like the group one could be good for other people, but I feel like one on one would have been better for me. Um, with other people around I don’t feel as safe as if there was just one person.”(13-year-old youth)
“I wanted someone in my own age and not somebody that’s going to try to analyze me and my feelings is somebody to feel emotions with.”(16-year-old youth)
“It was a lot of sessions in a very busy time with other pre-op appointments.”(14-year-old youth)
3.3. Quantitative Results
3.3.1. Baseline Characteristics
3.3.2. Youth Satisfaction with the PPP Intervention
3.3.3. Caregiver Satisfaction with the PPP Intervention
3.4. Data Integration
4. Discussion
4.1. Tailoring the Intervention’s Focus
4.2. Group Versus Individual Intervention
4.3. Severity of Mental Health in the Present Sample
4.4. Caregiver Support as a Key Component of the Intervention
4.5. Strengths and Limitations
4.6. Future Research Directions
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Variable | n (%) | M (SD) | Min | Max |
---|---|---|---|---|
Assigned Sex | ||||
Female | 14 (58.3) | |||
Male | 9 (37.5) | |||
Missing | 1 (4.2) | |||
Age (Years) | 14.1 (2.1) | 9 | 18 | |
Ethnicity | ||||
White | 14 (58.3) | |||
Black | 4 (16.7) | |||
South Asian | 3 (12.5) | |||
East Asian | 1 (4.2) | |||
Prefer not to answer | 2 (8.3) | |||
Surgery Type | ||||
Scoliosis | 9 (37.5) | |||
Foot | 9 (37.5) | |||
Pectus | 4 (16.7) | |||
Cranioplasty | 1 (4.2) | |||
Other (“ortho”) | 1 (4.2) | |||
History of Pain | ||||
Yes | 14 (58.3) | |||
Duration of pain (years) | 5.2 (4.5) | 0.1 | 16 | |
No | 7 (29.2) | |||
Past Surgery | ||||
No | 13 (54.2) | |||
Yes | 10 (41.2) | |||
One | 7 (70.0) | |||
More than one | 3 (30.0) | |||
Years since last surgery | 5 (3.7) | 1 | 12 | |
1–3 | 4 (40.0) | |||
4–6 | 3 (30.0) | |||
7–9 | 1 (10.0) | |||
10+ | 2 (20.0) |
Measure | Mean Value (SD) | Range |
---|---|---|
All study participants (n = 24) | ||
Youth Pain Catastrophizing Scale (t score) | 57.42 (12.72) | 30.33–88.18 |
Parent Pain Catastrophizing Scale (t score) | 61.07 (10.99) | 35.18–77.61 |
Pain Intensity—overall (mean) | 3.54 (2.66) | 0–8 |
Pain Intensity—worst (mean) | 4.63 (3.19) | 0–9 |
PROMIS Anxiety (t score) | 54.37 (12.28) | 33.5–74.6 |
PROMIS Depression (t score) | 51.92 (12.77) | 35.2–71.4 |
PROMIS Pain Interference (t score) | 58.51 (10.99) | 34–75 |
Interview participants (n = 6) | ||
Youth Pain Catastrophizing Scale (t score) | 61.00 (14.08) | 41.90–88.18 |
Parent Pain Catastrophizing Scale (t score) | 57.40 (9.18) | 47.30–72.56 |
Pain Intensity—overall (mean) | 3.83 (2.86) | 0–7 |
Pain Intensity—worst (mean) | 5.17 (3.37) | 0–8 |
PROMIS Anxiety (t score) | 61.15 (11.51) | 44.9–74.6 |
PROMIS Depression (t score) | 57.33 (12.57) | 35.2–71.4 |
PROMIS Pain Interference (t score) | 61.18 (6.92) | 51.7–71.5 |
Outcome | Youth | Caregiver |
---|---|---|
n (%) | n (%) | |
The timing of the PPP sessions relative to the surgery were: | ||
Just right | 18 (75.0) | 21 (87.5) |
Too close to surgery date to be helpful | 2 (8.33) | 2 (8.3) |
Too far away from surgery date to be helpful | 4 (16.7) | 1 (4.2) |
If it were my choice, the three sessions before the surgery should occur: | ||
2 weeks before surgery | 11 (45.8) | 9 (37.5) |
Less than 2 weeks before surgery | 9 (37.5) | 7 (29.2) |
1 month before surgery | 3 (12.5) | 7 (29.2) |
3 months before | 0 (0) | 1 (4.2) |
Did not respond | 1 (4.2) | 0 (0) |
The number of the PPP sessions before the surgery was: | ||
Just right | 19 (79.2) | 21 (87.5) |
Too many | 3 (12.5) | 2 (8.3) |
Too few | 1 (4.2) | 1 (4.2) |
Did not respond | 1 (4.2) | 0 (0) |
The number of the PPP sessions after the surgery was: | ||
Just right | 21 (87.5) | 18 (75.0) |
Too few | 3 (12.5) | 6 (25.0) |
I would have preferred if the PPP sessions were offered in a group format with other teens who are going to have surgery. | ||
Disagree | 18 (75.0) | 1 (4.2) |
Agree | 6 (25.0) | 23 (95.8) |
I feel that having a caregiver involved in the PPP was helpful. | ||
Agree | 21 (87.5) | 23 (95.8) |
Disagree | 3 (12.5) | 1 (4.2) |
The amount of caregiver involvement in the PPP sessions was: | ||
Just right | 22 (91.7) | 18 (75.0) |
Too much | 1 (4.2) | 0 (0) |
Too little | 1 (4.2) | 5 (20.8) |
Did not respond | 0 (0) | 1 (4.2) |
Modality Preference | ||
Virtual by video conference | 20 (83.3) | 22 (91.7) |
In person | 4 (16.7) | 2 (8.3) |
I felt comfortable interacting with my healthcare providers over video. | ||
Agree | 23 (95.8) | 24 (100.0 |
Did not respond | 1 (4.2) | 0 (0) |
Outcome | n (%) |
---|---|
My personalized coping plan provided at the end of the PPP was helpful. | |
Agree | 22 (91.7) |
Disagree | 1 (4.2) |
Did not respond | 1 (4.2) |
The PPP sessions provided me with helpful information and strategies to help me learn different ways to cope with my pain and any worries related to the surgical experience. | |
Agree | 21 (87.5) |
Disagree | 2 (8.3) |
Did not respond | 1 (4.2) |
Overall, the PPP taught me new strategies and skills for managing pain. | |
Agree | 20 (83.3) |
Disagree | 3 (12.5) |
Did not respond | 1 (4.2) |
Skills considered helpful: | |
Breathing techniques | 19 (79.2) |
Understanding how pain works in the body | 20 (83.3) |
Relaxation practices | 21 (87.5) |
Anxiety reduction | 21 (87.5) |
Challenging negative thoughts | 15 (62.5) |
Self-hypnosis | 13 (54.2) |
Physical pain management | 22 (91.7) |
Strategies to reduce fears associated with surgery | 20 (83.3) |
Personalized coping plan | 19 (79.2) |
Outcome | n (%) |
---|---|
The PPP helped my worries about the surgical experience. | |
Agree | 22 (91.7) |
Disagree | 1 (4.2) |
Did not respond | 1 (4.2) |
The PPP improved my ability to cope with pain. | |
Agree | 20 (83.3) |
Disagree | 3 (12.5) |
Did not respond | 1 (4.2) |
The PPP prepared me on how to manage my pain. | |
Agree | 23 (95.8) |
Did not respond | 1 (4.2) |
The PPP improved my confidence in managing pain after the surgery. | |
Agree | 21 (87.5) |
Disagree | 2 (8.3) |
Did not respond | 1 (4.2) |
Overall, the PPP was helpful in preparing me for my surgical experience. | |
Agree | 21 (87.5) |
Disagree | 2 (8.3) |
Did not respond | 1 (4.2) |
Did your therapist providing the PPP help identify any other challenging issues for you (e.g., anxiety, low mood) that needed to be addressed in addition to the surgical pain? | |
Yes | 14 (58.3) |
No | 9 (37.5) |
Did not respond | 1 (4.2) |
Overall, I would recommend the PPP for other children undergoing surgery and their families. | |
Agree | 22 (91.7) |
Disagree | 1 (4.2) |
Did not respond | 1 (4.2) |
Outcome | n (%) |
---|---|
My child’s personalized coping plan provided at the end of the PPP was helpful. | |
Agree | 21 (87.5) |
Disagree | 3 (12.5) |
The PPP sessions provided my child with enough information to have different ways to help them cope with their pain and worries related to the surgical experience. | |
Agree | 22 (91.7) |
Disagree | 2 (8.3) |
The PPP sessions provided me with enough information to have different ways to help my child cope with their pain and worries related to the surgical experience. | |
Agree | 22 (91.7) |
Disagree | 2 (8.3) |
Skills considered effective for child: | |
Worries about the surgical experience | 21 (87.5) |
Ability to cope with pain | 17 (70.8) |
Preparing to manage pain | 18 (75.0) |
Improving confidence in managing pain | 17 (70.8) |
Improving day to day function | 10 (41.7) |
Teaching new pain management skills and strategies | 17 (70.8) |
Skills considered effective for caregiver: | |
Worries about the surgical experience | 18 (75.0) |
Ability to help child cope with pain | 18 (75.0) |
Preparing to help child manage pain | 18 (75.0) |
Improving confidence in managing child’s pain | 15 (62.5) |
Teaching new pain management skills and strategies | 15 (62.5) |
Overall, I would recommend the PPP for other children undergoing surgery and their families. | |
Agree | 23 (95.8) |
Disagree | 1 (4.2) |
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MacKenzie, N.E.; Rana, R.; Isaac, L.; Tyrrell, J.; Ruskin, D. “It Helped Me Understand What I Was Walking into:” Youth and Caregiver Acceptability and Satisfaction with a Psychological Perioperative Pain Management Intervention. Healthcare 2025, 13, 1527. https://doi.org/10.3390/healthcare13131527
MacKenzie NE, Rana R, Isaac L, Tyrrell J, Ruskin D. “It Helped Me Understand What I Was Walking into:” Youth and Caregiver Acceptability and Satisfaction with a Psychological Perioperative Pain Management Intervention. Healthcare. 2025; 13(13):1527. https://doi.org/10.3390/healthcare13131527
Chicago/Turabian StyleMacKenzie, Nicole E., Remsha Rana, Lisa Isaac, Jennifer Tyrrell, and Danielle Ruskin. 2025. "“It Helped Me Understand What I Was Walking into:” Youth and Caregiver Acceptability and Satisfaction with a Psychological Perioperative Pain Management Intervention" Healthcare 13, no. 13: 1527. https://doi.org/10.3390/healthcare13131527
APA StyleMacKenzie, N. E., Rana, R., Isaac, L., Tyrrell, J., & Ruskin, D. (2025). “It Helped Me Understand What I Was Walking into:” Youth and Caregiver Acceptability and Satisfaction with a Psychological Perioperative Pain Management Intervention. Healthcare, 13(13), 1527. https://doi.org/10.3390/healthcare13131527