| Literature DB >> 34046536 |
Lauren E Claus1, Anne R Links1, Janine Amos1, Heather DiCarlo2, Eric Jelin3, Rahul Koka4, Mary Catherine Beach5, Emily F Boss1.
Abstract
Parent experience is a core component of the quality of pediatric care and an increasingly common focus of quality improvement initiatives. However, the parent experience of communication in the pediatric surgical setting remains unexplored.Entities:
Year: 2021 PMID: 34046536 PMCID: PMC8143772 DOI: 10.1097/pq9.0000000000000403
Source DB: PubMed Journal: Pediatr Qual Saf ISSN: 2472-0054
Participant Characteristics (N = 20)
| Characteristics | n (%) |
|---|---|
| Parent gender | |
| Male | 2 (10) |
| Female | 18 (90) |
| Male | 13 (65) |
| Female | 7 (35) |
| White | 11 (55) |
| African American | 7 (35) |
| Asian | 1 (5) |
| Other | 1 (5) |
| 10.85 (4.8711) | |
| Repeat surgery patient at Hopkins | 10 (50) |
| First-time surgery patient at Hopkins | 10 (50) |
| 25.2 (23.46) | |
| 5 (25) | |
| 1 (5) | |
| 7 (35) | |
| 3 (15) | |
| 1 (5) | |
| Urology | 3 (15) |
3 burn scar laser treatments performed (15%). All other surgeries listed performed only once (5%).
Representative Quotations about Provider–Parent Communication (N = 20)
| Theme | Representative Quotations |
|---|---|
| Interpersonal characteristics (n = 19) | “He had us at such ease that if he would’ve said, ‘If we drop [him] on his head, it will fix him,’ I’d seriously think about it … He presented himself as such a calm person that was under such control of the situation.” “I'm always like the champion and the cheerleader and I'm like 'yay we're going to do it,' and inside I'm like dying.” |
| Reassurance for parents (n = 10) | “She relieves anxiety … that’s what they deal with every day. They know how parents are feeling and what to do to get them to feel better.” |
| Recognition of child’s psychosocial needs (n = 9) | “He said things like it’s ugly, it’s disgusting, it looks gross … you just think about boys and his penis and the self-esteem and the mindset. I would have appreciated them taking the lead on that: like these are some things that he may be thinking or feeling, these are some things that we could maybe say if that happens.” |
| Professional teamwork (n = 8) | “She works well with others … she’s going to get the chemistry from the nephrology side of the house, the timing from the anesthesia side of the house … That’s also peace of mind.” |
| Multimodal information-sharing (n = 7) | “What’s most helpful are the actual x-rays and photographs that we used each time to make comparisons.” “It was better with the pictures because then I’d see what my daughter’s ear was gonna look like … if I didn’t know that going in, I would have panicked.” |
| Inclusion of family (n = 4) | “He’s always including me. And even if he doesn’t agree with me he will hear what I have to say about it.” “I think that basically he didn’t want me to do it. I feel like he was even annoyed at the idea of teaching me how.” |
| Availability (n = 3) | “She has sent me emails at two a.m. that said, ‘I woke up and I was thinking about [Name] and how I could do X, Y, Z.’... She treats it like this is her body of work. What that does for my blood pressure and my wellbeing, I can’t explain.” |
| n, number of participants whose interview included this theme. | |
Representative Quotations about Parent Emotional Experience of Communication (N = 20)
| Theme | Representative Quotations |
|---|---|
| Worried (n = 20) | “This is one of the most stressful days a parent will ever have. Handing your child over for surgery, no one is at their best. Everyone is at their kind of weakest moment. You play that lottery … with your most precious commodity, your child.” |
| Responsible for child’s welfare (n = 15) | “I always say parents are forced to be the case manager.” “Trying to be like old buddy, old pal, just to make her feel calm … once it was all over … I can go back to being a mom.” |
| Responsible for understanding information (n = 11) | “Oh my gosh I would be scrambling to take notes on everything that they said … So it was hard for me to multitask. I always brought someone with me because I couldn’t manage my child’s care and listen at the same time.” |
| Strength (n = 8) | “As parents you have to be stronger and you can’t show that to them. Because it’s many a nights that me and her dad have held each other while we cried.” |
| Dismissed (n = 6) | “I felt really unheard and when I was in the car and we were leaving, I cried.” |
| Intimidated (n = 5) | “The surgeon’s gone to medical school. They have this prestigious career filled with experience. Parents get intimated by their education, by their title.” “You know, doctors are exalted, right?” |
| Offended (n = 4) | “He did show us a picture of that how [he] is straight and he did say, ‘what sorority girls won’t like that.’ That off-handed sexual joke about my son wasn’t appropriate.” |
| Overwhelmed (n = 4) | “When you’re a parent it’s sensory overload when you’re trying to help your kid and you have these really important questions that to the doctor are pretty standard … I don’t do this every day and this is my baby.” |
| Self-doubt (n = 4) | “We were like, ‘What have we done to her?’ She was in pain, she was crying. We were just always second guessing it.” |
| Mistrust (n = 4) | “I’ve gotten to the point now that I don’t even trust that. I just don’t even know if they’re saying that because it’s hubris.” |
| n, number of participants whose interview included this theme. | |
Representative Quotations of Parents’ Concerns and Solutions
| Theme | Parent’s Concern | Parent’s Solution |
|---|---|---|
| Recognition of Child’s Psychosocial Needs | “It rekindles all of those memories of the night that the incident happened and the person who caused it. It steers a little bit her emotions back up.” | “From the hospital staff and the doctors, they tried to be very upbeat and relaxed and cheerful, and I think that is incredibly helpful.” |
| Information-sharing | “I just wanted to see what my son’s ears look like now, you know?” | “I wanted a diagram of what the PE tube would actually look like.” |
| Intimidated | “But it can feel intimidating because you’re there.” | “What advice I would give is don’t be intimidated. Don’t be intimidated by their credentials, don’t be intimidated if you feel that your questions might not be smart enough.” |
| Offended | “And the doctor sat us down … He goes, ‘I think your son’s making it all up.’” | “That phrase... was the downside. It would have been much better just saying, ‘We didn’t visibly see anything, but we’re waiting for results from biopsies to give a more clear picture.’” |
| Dismissed | “And he literally turned on his heels and walked out of the office. And it made me feel like a failure.” | “If I were to ask for anything, just more peaceful patience. And not feeling like we were just a cog in the wheel … When they come into the room, to sit down, to maybe not do like the speed talking … Maybe not leave until ‘hey, do you have any other questions?’” |
| Strength | “I’m always the champion and the cheerleader and I’m like yay we’re going to do it and inside I’m like dying.” | “So the little bit of support from the doctors and the nurses, the moral support, it really helps in situations like this.” |
| Preparation for surgery (day of) | “They don’t call you until very late in the day before to let you know what time to arrive, which is a little nerve-racking for me.” | “I was just surprised at how late it was in the day that they called. I would’ve preferred that it had been a little earlier.” |
| Anesthesia | “I really didn’t like the way that they said, ‘We’re going to give you a new pacifier’ … He had no clue what that meant then.” | “I would know which language would be most reassuring for him and the least scary. I needed those three seconds to just explain to him.” |
Fig. 1.Key Driver Diagram—Model for Improving the Parental Experience of Care and Communication in the Pediatric Surgical Setting