Social adversities, including health-harming social risks and adverse childhood experiences, contribute to poor outcomes after hospital discharge. Screening for social adversities is increasingly pursued in outpatient settings. Identifying and addressing such adversities has been linked to improved child outcomes. Screening for social adversities and strengths in the inpatient setting may contribute to better transitions from hospital to home. Our goal was twofold: 1. to use qualitative methods to understand parent perspectives around screening tools for potential use in inpatient settings; and 2. to develop a family-friendly inpatient screening tool for social adversity.
We used in-depth, cognitive qualitative interviews with parents to elicit their views on existing screening tools covering social adversities and strengths. We partnered with a local nonprofit to recruit parents who recently had a child hospitalized or visited the emergency department. There were 2 phases of the study. In the first phase, we used qualitative methods to develop a screening prototype. In the second phase, we obtained feedback on the prototype.
We interviewed 18 parents who identified 3 major themes around screening: 1. factors that promote parents to respond openly and honestly during screening; 2. feedback about screening tools and the prototype; and 3. screening should include resources.
Social adversity routinely affects children; hospitalization is an important time to screen families for adversity and potential coexisting strengths. Using qualitative parent feedback, we developed the family friendly Collaborate to Optimize Parent Experience screening tool.
Social adversities, including financial and social hardships, food insecurity, limited access to transportation, racism, and adverse childhood experiences (ACEs), contribute to child health disparities, including preventable rehospitalization.1–4 To identify at-risk children and families, the American Academy of Pediatrics recommends practice-relevant screening for both adversities and strengths.5–8
Screening for and intervening to mitigate adversities or promote strengths largely occurs in outpatient settings,9 resulting in better access to resources, adherence to preventive care, and fewer social needs in subsequent visits.1,10,11 Though many inpatient providers are aware of links between social adversities and suboptimal postdischarge outcomes, they do not routinely address such risks during hospitalizations.9 Barriers to screening questionnaires include time to administer, patient acuity, lack of training in how to ask sensitive questions, lack of long-term relationship with parent/patient, and limited capacity to provide resources.9 Additionally, parents or caregivers (hereafter, referred to as parents) might not feel comfortable responding truthfully to sensitive questions, particularly for Black families given historical mistrust with the medical system.9,12,13 However, recent studies describe that parents have positive perceptions of screening in the hospital.9,14 An advantage to inpatient screening is that parents may be present for longer durations, which can provide the medical team with more time to assess social needs.
Inpatient social screening may also help optimize transitions from hospital to home. Parents describe stress or being “in a fog” during a pediatric hospitalization, which may result in difficulty processing information and lack of confidence in providing postdischarge care.15 Our previous research demonstrated that parental ACE prevalence is high in parents of hospitalized children, as well as a dose-response relationship between parent ACEs and coping difficulties 2 weeks after their child’s hospital discharge.16 Additionally, children of parents with high ACEs have higher odds of health care reutilization 1 month after hospital discharge.17 Parents with higher resilience scores had less difficulty coping during this time. Thus, learning how best to screen parents for social adversities and strengths in inpatient settings is critical to promote the best possible outcomes for children.
Although parents feel comfortable with screening in inpatient settings, we have not identified a parent-informed approach on how best to do so.18,19 We, therefore, sought to:
understand parent perspectives on existing screening tools; and
develop a family friendly inpatient tool that addresses inpatient barriers to screening and identifies families of hospitalized children who are at high risk for suboptimal hospital-to-home transitions.
Methods
Study Design
We used in-depth, cognitive interviews to elicit parents’ views on existing social screening tools. The prototype tool used questions from the ACE questionnaire, Brief Resilience Scale, a set of financial and social hardship questions, and a portion of the Accountable Health Communities questionnaire.2,20–22 These tools individually have been used in work showing a link between social adversity and poor outcomes after hospital discharge.16,17,23,24 Parents were eligible for the study if they were aged ≥18 years and their child had ever visited the emergency department or been hospitalized. Participants were recruited November 2018 through November 2020. This study was reviewed and ruled exempt by the university’s institutional review board.
An open-ended, semistructured interview guide was developed by the research team; all participants were interviewed by a qualitative methods expert (A.P.). Interviews used open-ended questions, including verbal cognitive probes to ask for specific information about the question and answer choices within the screening tools. Further open-ended, ethnographic probes emphasized participants’ perceptions and beliefs to understand if tool questions were seen as relevant and appropriate as worded.25–27
We had 2 phases of interviews. During Phase 1, we asked participants to review existing screening tools (n = 10, Phase 1). We focused on wording, question clarification, length, and means of operationalization (eg, paper, face-to-face). We used Phase 1 feedback to modify questions and format of the screening tool prototype (Appendix A). We used this updated prototype and interview guide to interview a new set of parents (n = 8, Phase 2) to gain additional feedback about the prototype. The multidisciplinary study team was made up of 5 researchers; 3 pediatricians (A.N.S., C.R., J.H.), a qualitative methods expert (A.P.), and a research coordinator (D.B.).
Recruitment
During Phase 1, we partnered with a parent leader (E.G.) from a community-based, parent-led organization (Healthy Homes, Block by Block) to recruit 10 parents of previously hospitalized children who lived in Cincinnati’s Price Hill neighborhood. Children from Price Hill experience disproportionately high rates of hospitalization compared with those living in other neighborhoods.28 We used purposeful and snowball sampling strategies to recruit participants.29 Phase 1 interviews were conducted in person at a participant’s chosen location.
For a portion of Phase 2 (6 participants), we began recruiting parents during hospitalization given the novel coronavirus (severe acute respiratory syndrome coronavirus 2) pandemic. Parents were recruited if they were admitted to our hospital medicine service from April 2020 to November 2020. Interviews were conducted either in person or virtually during or within a month of hospitalization.
All participants consented to participate. Participant demographics were collected to ensure adequate representation and enable assessment of whether different themes emerged across varying sociodemographic characteristics. For reference, our institution’s hospital medicine patients are ∼75% white, 20% Black, and 3% Hispanic. We were only able to recruit English-speaking parents. Participants received a $20 gift card incentive. All interviews were audio-recorded and transcribed verbatim.
Analysis
We conducted emergent coding to develop a codebook and identify themes. There were 3 members of the analysis team. Two members independently coded the transcribed interviews. A third team member reviewed both sets of codes and associated quotes to identify areas of agreement and disagreement. The analysis team and the principal investigator (A.N.S.) then reviewed and discussed areas of disagreement, resolving them by consensus. We recorded codes in a master codebook from Phase 1; we then applied these codes to Phase 2. Once all transcripts were coded, we sorted the data into themes.
Results
Participants
We interviewed 18 participants total; 10 in Phase 1 and 8 in Phase 2. Of the 18 parents, 83% were female, 72% were white, and all were non-Hispanic (Table 1).
Participant Demographics
| Characteristic | N = 18 | % |
|---|---|---|
| Sex | ||
| Male | 3 | 16.7 |
| Female | 15 | 83.3 |
| Age | ||
| 20–29 y | 4 | 22.2 |
| 30–39 y | 11 | 61.1 |
| 40–49 y | 2 | 11.1 |
| 50–59 y | 1 | 5.6 |
| 60+ y | 0 | 0.0 |
| Race | ||
| Black | 5 | 27.8 |
| White | 13 | 72.2 |
| Ethnicity | ||
| Non-Hispanic/Latino(a) | 18 | 100.0 |
| Hispanic/Latino(a) | 0 | 0.0 |
| Education | ||
| Less than high school degree | 2 | 11.1 |
| High school degree or equivalent (eg, GED) | 6 | 33.3 |
| Some college | 4 | 22.2 |
| Associate degree | 3 | 16.7 |
| Bachelor’s degree | 2 | 11.1 |
| Graduate degree | 1 | 5.6 |
| Characteristic | N = 18 | % |
|---|---|---|
| Sex | ||
| Male | 3 | 16.7 |
| Female | 15 | 83.3 |
| Age | ||
| 20–29 y | 4 | 22.2 |
| 30–39 y | 11 | 61.1 |
| 40–49 y | 2 | 11.1 |
| 50–59 y | 1 | 5.6 |
| 60+ y | 0 | 0.0 |
| Race | ||
| Black | 5 | 27.8 |
| White | 13 | 72.2 |
| Ethnicity | ||
| Non-Hispanic/Latino(a) | 18 | 100.0 |
| Hispanic/Latino(a) | 0 | 0.0 |
| Education | ||
| Less than high school degree | 2 | 11.1 |
| High school degree or equivalent (eg, GED) | 6 | 33.3 |
| Some college | 4 | 22.2 |
| Associate degree | 3 | 16.7 |
| Bachelor’s degree | 2 | 11.1 |
| Graduate degree | 1 | 5.6 |
Themes
Phase 1 identified 2 themes. Phase 2 reinforced themes 1 and 2 and generated a third theme (Table 2). After Phase 1, we adjusted the screening tool in response to the feedback; we updated our interview guide to reflect electronic screening on a tablet. In Phase 2, we received additional feedback on the modified screening tool, resulting in a third theme and additional subthemes. The final screening tool, Collaborate to Optimize Parent Experience (COPE), is detailed in Appendix B, and a sample of the tool is presented in Fig 1.
Themes and Subthemes Identified By Parents in Phase 1 and Phase 2
| Themes | Subthemes | Phase 1 | Phase 2 | Quotation (#, Participant Number) |
|---|---|---|---|---|
| Factors that promote parents to respond openly and honestly during screening | Comfort of setting | x | • …if something had happened to me, I might be uncomfortable, because if I hadn’t, like, already confided in my kid, I probably wouldn’t want them to know that…(8) • Now, depending on who’s in a room with me will affect how I answer this. (9) | |
| x | ||||
| Administration of the tool | x | • I think people would feel more comfortable on a tablet because they wouldn’t have to, like, say it out loud. (8) • I think [answering on the tablet] is really good, because if they didn’t feel comfortable talking to the doctor about it…but I think it, about people who are maybe having some of these issues, maybe would be more honest about it. (14) • Hmm, not immediately, but maybe after we’d been there for a few h and settled in, or even like we got admitted at night, so like the next day, after we have a handle on what’s actually going on. (15) | ||
| x | ||||
| Parent perceptions of next steps | x | • I guess if somebody didn’t want help, then they would probably feel like answering these would raise red flags to where people would be looking into the situation, because they are very detailed on some things. Like, they specifically ask about abuse and stuff like that. (8) • I think it would be easier to answer honestly without a relationship if I knew what that meant. Like, what is going to come of this? Is it because you’re going to connect me with people to get help, or is it just because you’re asking these questions and you want to know, and it’s going to go into a system somewhere? (3) • I wonder if it was prefaced with, you know, if you answer yes, we’re willing to help you with that. Like, is there an action set behind if someone checks, yes, I have trouble? Then what? (15) | ||
| x | ||||
| x | ||||
| Justification of screening | x | • But I understand the philosophy behind it, but…when you’re [in the hospital] at that moment, you’re not worried about filling out paperwork. You’re worried about making sure your kid’s okay. You don’t care about nothing else. (4) • I, like that you said, we ask all families, that’s good, no individual, you know. You got to get away from the singular, so I don’t take it personally… That’s absolutely, positively perfect, because you’re taking the individual piece off of me, and you’re saying, hey, this is everyone. (11) | ||
| x | ||||
| Feedback about screening tools and the prototype | Specific screening tool adjustments | x | • I think it, for me, it’s the same thing but different wording. And also, because like stressful and hard times, I feel like they go hand in hand, you know, because your stress level is going to be because of something that’s happening. (9) • [Referring to Brief Resilience Scale] To me, it’s like exactly the same as the first one. Like, I would think they were identical because, again, I think it’s saying, like, how long does it take you to become, you know, mentally sound again after having a stressful event happen? (8) • You know how they do that with kids, like, how are you feeling today? I, that one, that’s, for me, that’s just like treating me like I’m a kid. Now this one is more of an adult, you know? It gives you more; a range to pick from versus just smiley faces. (13) • Like maybe someone might write something…versus it’s like you’re narrowing the thing…they can’t say, well, I feel suicidal, or I feel “this.” Like, you wouldn’t know that because of these choices. Versus you leaving it open, you may know something, like, you know, a person may not be willing to tell otherwise. (12) | |
| x | ||||
| x | ||||
| x | ||||
| Screening tool addresses lived experience of parents during hospitalization | x | • …I felt bad leaving him in the room to have the nurses watch him, to go, you know, and I felt like I couldn’t leave. And so, I feel like that was definitely the way that I would typically reduce stress. But I, it was hard for me to do that while we were there. And the same thing with taking a walk. You know, I just felt like I should stay here. (15) • Don’t forget to eat and drink water and healthy foods. Yeah, that’s kind of hard in here. Because…you’re going to have, like, a constant revolving door of people in... It’s like the moment you leave, it’s like someone has came in…you don’t want to miss…what’s going on, because it could be important. (12) • Like, you can’t afford to eat at the cafeteria every day. You can’t afford to order something out every day. Like, that takes a whole toll on you, especially if you haven’t been to work or you’re on a tight budget. That’s a very good question. (16) • … But not every…parent has, like, a support system. So, it’s kind of, like, it’s us and the staff here that…they are our support system. (12) • The parent can only do so much…So we’re depending on the team to give the right support, to give the child everything, and we depend on the team, so, yeah. (13) | ||
| Hearing what parents are going through | x | • I just need you to hear what I’m going through. I need you to understand what the issue is, because that would be me because that’s what I would need….I knew what the issue was, but they were under the impression they had to find the issue. I already knew what the issue was. So, I’m dismissed. (11) • Listening, people don’t always listen to listen. People, I feel like sometimes, people listen to retaliate and say other things, versus just like listening and hearing how your problem is. (13) • …When my son was being admitted and being discharged, I really didn’t, I wish I had a social worker there to check on me per se, versus, you know, them speaking to me and speaking to where I understood some things, and I felt like they were leaving some things out. Like, they did not want to tell me everything that’s going on. And I know that has happened in the past. They have not told me everything that was going on. I guess they didn’t want me to stress or whatnot. I don’t know. Maybe they thought I wouldn’t understand it. (18) | ||
| Opportunity for parents to verbalize emotions | x | • …I never thought about myself…to even wonder how am I doing? It’s just, like, my focus has always been on my child…That was a hard, it wasn’t a hard question, but it was, like, wow, like, how am I doing? (12) • Yeah, sometimes, when you don’t know what’s going on with your child, you don’t know how to verbalize it and tell them exactly what’s going on, so, questionnaires, or things like that, help out. (14) • Because, yes, you feel all of this. You, like literally, you feel everything on here. And you feel happy too, especially like when they’re, you know, you see the progress that they’re making. (12) | ||
| Screening should include resources. | (General) | x | • …When it’s a lot, people can get overwhelmed, because it’s so much where they wouldn’t know what to do, so…[in reference to the number of resources included]. (13) • …But in my mind, as I was reading, I was thinking, are these things included in the price of being at [the hospital] or do you have to pay extra for them? (15) • Even if they say, go on your phone and pull it up on this app, like, you’re not going to do it. Versus like…when a paper is presented, you’re going to pick it up. You’re going to read it. (12) | |
| Awareness of resource | x | • I didn’t even know they had a family resource center, so I didn’t even know they had that. (12) • Me, personally, I didn’t even know there was a concierge service, and so making…patients or families more aware of the services, but I think it’s a good list to have. (14) | ||
| Who is providing resource | x | • I do know some people that feel like social workers are bad, but I’m not that type of person. I know social workers are there to help. (18) • Not so much a social worker, because that kind of like scares people…because they automatically think, oh, social worker, probably want to take all my kids and stuff like that… Versus talking to someone that’s a chaplain or a therapist or whatever, it’s like you’re more so talking to like having a general conversation. It’s not so, like, intense, like, with a doctor or a nurse or something like that. (12) |
| Themes | Subthemes | Phase 1 | Phase 2 | Quotation (#, Participant Number) |
|---|---|---|---|---|
| Factors that promote parents to respond openly and honestly during screening | Comfort of setting | x | • …if something had happened to me, I might be uncomfortable, because if I hadn’t, like, already confided in my kid, I probably wouldn’t want them to know that…(8) • Now, depending on who’s in a room with me will affect how I answer this. (9) | |
| x | ||||
| Administration of the tool | x | • I think people would feel more comfortable on a tablet because they wouldn’t have to, like, say it out loud. (8) • I think [answering on the tablet] is really good, because if they didn’t feel comfortable talking to the doctor about it…but I think it, about people who are maybe having some of these issues, maybe would be more honest about it. (14) • Hmm, not immediately, but maybe after we’d been there for a few h and settled in, or even like we got admitted at night, so like the next day, after we have a handle on what’s actually going on. (15) | ||
| x | ||||
| Parent perceptions of next steps | x | • I guess if somebody didn’t want help, then they would probably feel like answering these would raise red flags to where people would be looking into the situation, because they are very detailed on some things. Like, they specifically ask about abuse and stuff like that. (8) • I think it would be easier to answer honestly without a relationship if I knew what that meant. Like, what is going to come of this? Is it because you’re going to connect me with people to get help, or is it just because you’re asking these questions and you want to know, and it’s going to go into a system somewhere? (3) • I wonder if it was prefaced with, you know, if you answer yes, we’re willing to help you with that. Like, is there an action set behind if someone checks, yes, I have trouble? Then what? (15) | ||
| x | ||||
| x | ||||
| Justification of screening | x | • But I understand the philosophy behind it, but…when you’re [in the hospital] at that moment, you’re not worried about filling out paperwork. You’re worried about making sure your kid’s okay. You don’t care about nothing else. (4) • I, like that you said, we ask all families, that’s good, no individual, you know. You got to get away from the singular, so I don’t take it personally… That’s absolutely, positively perfect, because you’re taking the individual piece off of me, and you’re saying, hey, this is everyone. (11) | ||
| x | ||||
| Feedback about screening tools and the prototype | Specific screening tool adjustments | x | • I think it, for me, it’s the same thing but different wording. And also, because like stressful and hard times, I feel like they go hand in hand, you know, because your stress level is going to be because of something that’s happening. (9) • [Referring to Brief Resilience Scale] To me, it’s like exactly the same as the first one. Like, I would think they were identical because, again, I think it’s saying, like, how long does it take you to become, you know, mentally sound again after having a stressful event happen? (8) • You know how they do that with kids, like, how are you feeling today? I, that one, that’s, for me, that’s just like treating me like I’m a kid. Now this one is more of an adult, you know? It gives you more; a range to pick from versus just smiley faces. (13) • Like maybe someone might write something…versus it’s like you’re narrowing the thing…they can’t say, well, I feel suicidal, or I feel “this.” Like, you wouldn’t know that because of these choices. Versus you leaving it open, you may know something, like, you know, a person may not be willing to tell otherwise. (12) | |
| x | ||||
| x | ||||
| x | ||||
| Screening tool addresses lived experience of parents during hospitalization | x | • …I felt bad leaving him in the room to have the nurses watch him, to go, you know, and I felt like I couldn’t leave. And so, I feel like that was definitely the way that I would typically reduce stress. But I, it was hard for me to do that while we were there. And the same thing with taking a walk. You know, I just felt like I should stay here. (15) • Don’t forget to eat and drink water and healthy foods. Yeah, that’s kind of hard in here. Because…you’re going to have, like, a constant revolving door of people in... It’s like the moment you leave, it’s like someone has came in…you don’t want to miss…what’s going on, because it could be important. (12) • Like, you can’t afford to eat at the cafeteria every day. You can’t afford to order something out every day. Like, that takes a whole toll on you, especially if you haven’t been to work or you’re on a tight budget. That’s a very good question. (16) • … But not every…parent has, like, a support system. So, it’s kind of, like, it’s us and the staff here that…they are our support system. (12) • The parent can only do so much…So we’re depending on the team to give the right support, to give the child everything, and we depend on the team, so, yeah. (13) | ||
| Hearing what parents are going through | x | • I just need you to hear what I’m going through. I need you to understand what the issue is, because that would be me because that’s what I would need….I knew what the issue was, but they were under the impression they had to find the issue. I already knew what the issue was. So, I’m dismissed. (11) • Listening, people don’t always listen to listen. People, I feel like sometimes, people listen to retaliate and say other things, versus just like listening and hearing how your problem is. (13) • …When my son was being admitted and being discharged, I really didn’t, I wish I had a social worker there to check on me per se, versus, you know, them speaking to me and speaking to where I understood some things, and I felt like they were leaving some things out. Like, they did not want to tell me everything that’s going on. And I know that has happened in the past. They have not told me everything that was going on. I guess they didn’t want me to stress or whatnot. I don’t know. Maybe they thought I wouldn’t understand it. (18) | ||
| Opportunity for parents to verbalize emotions | x | • …I never thought about myself…to even wonder how am I doing? It’s just, like, my focus has always been on my child…That was a hard, it wasn’t a hard question, but it was, like, wow, like, how am I doing? (12) • Yeah, sometimes, when you don’t know what’s going on with your child, you don’t know how to verbalize it and tell them exactly what’s going on, so, questionnaires, or things like that, help out. (14) • Because, yes, you feel all of this. You, like literally, you feel everything on here. And you feel happy too, especially like when they’re, you know, you see the progress that they’re making. (12) | ||
| Screening should include resources. | (General) | x | • …When it’s a lot, people can get overwhelmed, because it’s so much where they wouldn’t know what to do, so…[in reference to the number of resources included]. (13) • …But in my mind, as I was reading, I was thinking, are these things included in the price of being at [the hospital] or do you have to pay extra for them? (15) • Even if they say, go on your phone and pull it up on this app, like, you’re not going to do it. Versus like…when a paper is presented, you’re going to pick it up. You’re going to read it. (12) | |
| Awareness of resource | x | • I didn’t even know they had a family resource center, so I didn’t even know they had that. (12) • Me, personally, I didn’t even know there was a concierge service, and so making…patients or families more aware of the services, but I think it’s a good list to have. (14) | ||
| Who is providing resource | x | • I do know some people that feel like social workers are bad, but I’m not that type of person. I know social workers are there to help. (18) • Not so much a social worker, because that kind of like scares people…because they automatically think, oh, social worker, probably want to take all my kids and stuff like that… Versus talking to someone that’s a chaplain or a therapist or whatever, it’s like you’re more so talking to like having a general conversation. It’s not so, like, intense, like, with a doctor or a nurse or something like that. (12) |
Sample visual of COPE tool and selected questions. A. Indicates a primer for stress in the hospital and how this may be observed in different family members. This was abbreviated per parent input. B. Stress thermometer adapted from Liaw et al to address parental stress while hospitalized. C. Brief resilience screen scaled from 6 statements to 1 to remove redundancy. D. Resources identified and parents receive separate handout explaining each of the support staff/resources available.
Sample visual of COPE tool and selected questions. A. Indicates a primer for stress in the hospital and how this may be observed in different family members. This was abbreviated per parent input. B. Stress thermometer adapted from Liaw et al to address parental stress while hospitalized. C. Brief resilience screen scaled from 6 statements to 1 to remove redundancy. D. Resources identified and parents receive separate handout explaining each of the support staff/resources available.
Theme 1. Factors That Promote Parents to Respond Openly and Honestly During Screening
Four associated subthemes were: Comfort of the setting, administration of the tool, “What will come of this,” and justification of screening.
Subthemes. Comfort of Setting and Administration of the Tool
Parents discussed ways we might increase comfort to respond honestly. This included the screening environment, who was administering the screen, and who else was present during the screen. In Phase 1, participants said they would be more honest if the screen was delivered on an electronic tablet because “…it’s harder to say stuff out loud…”
Subthemes. Parent Perception of Next Steps and Justification for Screening
Participants in both phases mentioned that parents would only be honest if they wanted the help they believed would be offered. As 1 noted, “You want me to be honest…if I know you’re going to help connect me to wherever I need to be connected to, I will give you an answer.” In Phase 1, participants suggested that we explain why the screening tool is being used in the hospital, so we created a justification for screen administration (Fig 1A). In Phase 2, participants provided feedback on this justification. Some felt that the wording was “harsh” and suggested other words. However, most felt that the wording was “perfect because you’re taking the individual piece off of me, and you’re saying, hey, this is everyone.” Two participants felt that people were not going to answer honestly no matter how questions were posed. One explained, “People are going to say I have a steady place to live. Even if they don’t, they’re going to say that. Again, they don’t want nobody in their business. They’d rather suffer or get it by themselves I’ll say, because that’s how I am…”
Theme 2. Feedback About Screening Tools and Prototype
Theme 2 subthemes included specific screening tool adjustments and screening tool addresses lived experience of parents during hospitalization.
Subtheme. Specific Screening Tool Adjustments
Most participants shared that they did not find the length of the screen burdensome (Appendix A and B). A Phase 1 participant suggested that we let the family decide how and when to complete it. On the basis of this, we asked about timing of administration during Phase 2. Though the answers varied, most suggested that the optimal timing was during admission intake but also to be sensitive to the family circumstances.
Subtheme. Screening Tool Addresses Lived Experience of Parents During Hospitalization
During Phase 2, participants discussed if questions were reflective of their own hospital experience. Quotes were related to suggestions for how to manage stress during hospitalization. Some said that, although the suggestion to get something to eat or go take a walk off the unit was a good one, they “felt like [they] couldn’t leave” for fear of missing “what’s going on, because it could be important.” Participants also said the suggestion to remember to eat and drink water was difficult because they “can’t afford to eat at the cafeteria every day.” Regarding family support systems, some said that “not everyone has a support system” and that, although they are in the hospital, they are “depending on the [care] team to give the right support.”
Subtheme. Hear What Parents Are Going Through
In Phase 2, some participants shared that the prototype tool needed to include more opportunities for families to share their experiences on the basis of their previous experiences of being dismissed. We heard variations on this theme only from Black participants, which likely reflect their experiences of racism.30–32 Though trust was not directly mentioned, they said some “people listen to retaliate…versus just, like, listening and hearing how your problem is.” This comment was in response to the screening tool that suggested ways to cope with stress of hospitalization. Participants suggested being less prescriptive in the framing of some questions, answer options, and the follow-up provided.
Subtheme. Opportunity for Parents to Verbalize Emotions
During Phase 2, participants also said it was hard to verbalize their feelings during stressful situations but that “questionnaires…help out.” One participant said they never thought to “wonder, ‘How am I doing’” because their focus was on their child, which made it harder to assess themselves. Generally, participants felt that the way the screen characterized stress was relatable.
Theme 3. Screening Should Include Resources
There were 2 subthemes related to resources for support. These were: current awareness of resources and who is providing the resource. On the basis of feedback from Phase 1, we edited the screen to include resources (eg, child life) within the prototype. During Phase 2, we added interview questions focused on participant feedback and impressions of the resources. Some participants cautioned that the resource list was overwhelming. They also wanted relevant contact and cost information.
Subthemes. Current Awareness of Resources and Who is Providing the Resource
Many participants were not aware of existing hospital resources despite having been to the hospital several times. Most participants felt that the hospital should make “families more aware of the services” because many found them helpful.
Participants thought that the person providing the resources would influence whether a caregiver would use the resource. Broadly, participants thought information about resources should be provided by someone with whom they had a trusted relationship. The person or role that participants identified as trusted varied; some felt that resources should be provided by someone other than a social worker, nurse, or physician. One participant suggested that a chaplain…could provide resources because then it is more “like having a general conversation. It’s not so intense.”
Development of the Collaborate to Optimize Parent Experience (COPE) Tool
Using feedback from all themes, we made several adjustments to the screening tool. The final version of the inpatient screening tool, named COPE is included in Appendix B. A sample visual of this screen that highlights key changes we made based on qualitative input from parents is detailed in Fig 1. The readability grade level of the final tool is 5.8 using the Flesch-Kincaid tool, meaning in between a fifth- and sixth-grade level.33 Detailed below are modifications made.
The COPE tool will be administered electronically on a tablet. In an effort to ease into sensitive questions, we included a stress thermometer in Phase 2 at the beginning of the screener34 This thermometer was adapted by Liaw et al for the ICU setting35 ; we modified the thermometer further by including a face scale similar to a pain scale to help indicate high or low stress in the final version of COPE (Fig 1B). We also included a free response area to allow parents to share comments.
On the basis of Theme 2, we edited the tool to be actionable in the during hospitalization. We omitted questions around certain hardships (eg, strain), because we anticipated that the other questions directly assessing health-related social needs (eg, food insecurity) would offer families an opportunity to share relevant needs that the medical team could act upon. We kept the ACE questionnaire because we anticipated parent responses to these questions would help the medical team offer trauma-informed care responses.7,8
Parents commented on the redundancy of the Brief Resilience Scale, and the study team decided to limit this scale to 1 statement as noted in Fig 1C. We also incorporated parent feedback regarding the wording for the ACE questions, and then we reviewed other versions of the ACE questionnaire (eg, Center for Youth Wellness)36 to help simplify the language used in this part of the screening. We also included education on why ACE questions were being asked during hospitalization. Lastly, we created a separate resource information handout (Fig 1D) to improve awareness of resources.
Discussion
We used qualitative methods to design a family friendly inpatient screening tool. We used existing screening questionnaires to address the most transition-relevant needs a parent may have during and after hospitalization. It was critical to our team that the prototype be informed by the views of parents.
Parents identified key themes around how best to elicit honest responses, the relatability of the content to the actual experience of hospitalization, the opportunity to reflect on their own emotional states, and the chance to add suggestions on how to best offer resources. We also learned that many families were not aware of existing hospital resources (eg, pastoral care).
We identified different themes emerging from parents of Black children, and so we purposefully recruited additional parents who identified their children as Black. These parents highlighted wanting to be heard, validated, and listened to. Black patients and families consistently report that, though they try to share their experience in clinical settings, they often feel that clinicians do not have time to hear them.37 It is well established that provider bias and racism is a core determinant of health and a driver of inequities.12,13,38 One way to address this concern would be to align the cultural, racial, and/or ethnic background of those administering the screen.39 However, we know this may be difficult depending on diversity and availability of staff. Another solution may include staff trainings on cultural humility or implicit bias. Our future goal to help build trust is to ensure and educate on a trauma-sensitive and informed, empathetic approach.7,8 This approach recognizes family voice, in addition to training a compassionate workforce, and supporting a safe and healing environment, and may help build trust with historically marginalized populations.7,8
Previous literature has found parents to be comfortable with screening in the inpatient setting.14,40 Similar themes emerged between our cohort and a study by Leary et al14 ; these included ensuring a trusting relationship with the person administering a screen, and ensuring the screen is completed privately. Important differences between the Leary et al study and our own included parents noting that electronic screening would be the preferred option to ensure privacy and honesty of responses, which is highlighted in other studies, as well.41 Not being heard or listened to was also highlighted by our study participants. We suspect that this is reflective of not just our sample population, but representative of historically marginalized parents.
Our initial next steps included testing the COPE tool in electronic form in the inpatient setting; however, our institution has moved forward with testing social determinants of health screening using MyChart Bedside through Epic. We will gather additional feedback from parents and staff using this electronic screening method and plans to customize this tool include parental/family strengths.
Our study did have limitations. First, we interviewed a small set of parents who may not be fully representative of the general population. However, we did ensure that we reached thematic saturation and proactively recruited additional parents of Black children when we identified new, emerging themes from this subpopulation. Second, this study was at a single academic institution and was limited to English-speaking individuals. Therefore, these results may not be reflective of experiences of parents from other regions and those who do not speak English. Third, different interview settings may have influenced the parent responses; parents may be less forthcoming if interviews were during this period for fear of negative impact on care. However, these parents may be more acutely aware of their experience and likely provide real-time feedback around screening. We did not find differing themes from parents interviewed in-hospital versus after discharge.
Conclusions
We gathered parental input on screening instruments and developed the COPE screening tool using qualitative feedback. Our future goals include implementation of a screening tool and evaluation of its equity and effectiveness in meeting the needs of hospitalized children and their parents.
Drs Shah and Parsons conceptualized and designed the study, conducted the statistical analyses, drafted the initial manuscript, and reviewed and revised the manuscript; Ms Bosse, and Drs Lawler, Rubeiz, and Beck analyzed the data, helped to draft the manuscript, and reviewed and revised the manuscript; Ms Goodman, parent partner, substantially contributed to the field work of the study and revising of the manuscript with substantial input; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Supported by funds from the University of Cincinnati for Clinical and Translational Science and Training Community Health Partnership Grant (Dr Shah, Ms Goodman), and the Agency for Healthcare Research and Quality (#1K12HS026393-01, to Dr Shah). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding organizations. The funders had no role in the design or conduct of this study.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no conflicts of interest relevant to this article to disclose.
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