Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study
2.1. Participants & Design
2.2. Data Analysis
- Theme 1: Duality of Impact for Youth with Chronic Pain
“Many of our patients were doing much better without a lot of their typical stressors in their lives. Then of course we had the alternative cohort that was doing so much worse…it was a huge spectrum in terms of how the patients responded and how the families responded because for some of them it felt like they got this window of time to be able to work on this [pain management] and focus on this, and for some of them it just exacerbated everything. So it really did go both ways.”[HCP 001, Physiotherapist, PMCPC]
“It worked in two directions. There were groups of our kids who became more symptomatic, who became anxious, who became withdrawn, their mental health did suffer, they were alone, there was uncertainty, they weren’t able to go to their providers from whom they usually got care. So I think that group of kids did suffer. But then there’s this other part which is that many of our kids who were experiencing anxiety and it was being compounded by school actually did very well, like they stopped fussing over school, they could go and do some online learning, and they were all reporting that they were actually sleeping better, they were more active than they were, they were happier.”[HCP 006, Physician, PMCPC]
3.1. Mental Health and Stress Management
“Definitely some of them are nervous about coming into the hospital for in-person assessment, so we usually reassure them that we’re doing this safely that there’s PPE available. I think that [some patients] are more anxious about contracting this illness and then definitely we can feel that they are more anxious.”[HCP 010, Physician, PMCPC]
“I was concerned that my patients weren’t getting care and they weren’t getting access… they went a month or two with nothing… a lot of them were really spiraling. We started seeing self-harm cropping up, eating disorders popping up, increased suicidal ideation popping up.”[HCP 001, Physiotherapist, PMCPC]
“Some patients, because schools shut down, they felt less anxious in this way because they had less challenges. But you also could see the downside of that right… not getting challenged anymore, not getting outside, completely inactive, getting more back pain, being on the screens, having more sleeping difficulties, switching completely the sleep schedules, reverse sleep schedules, things like that.”[HCP 019, Physician, Community-Based Practice]
“I would say definitely the mental health [concern] has really increased, particularly pediatric mental health. Again, just the lack of outpatient resources and we certainly know that [with] chronic pain, obviously your pain is worse when your mental health is not as well and those two compound each other. I would see on an average shift now probably double the mental health cases that we had before, which is frustrating. The other night when I worked nights, more than 50% of my cases were mental health or social issues—the other one I’ve been seeing a lot of. So patients, where the tensions at home are so significantly high, that in some cases it’s actually unsafe for the children. I think there’s so much extra stress that people have not had to manage prior to this and there’s always something new.”[HCP 014, Physician, Pediatric Emergency Department]
“It did have an impact on worsening mental health, so a lot of [our patients] had more anxiety, more depression, which was kind of interlinked with anxiety about the pandemic. Isolation at home. What’s gonna happen? Parents’ mental health affecting them. Even if the child wasn’t really particularly worried about it, they just saw their parents worried about it. That kind of impacted them.”[HCP 011, Clinical Psychologist, PMCPC]
“I think the ones that have young kids at home, they’re absolutely exhausted, particularly the mothers, because as usual, women are shouldering the brunt of this pandemic. Especially say you have a teenager with chronic pain now at home, and then you have a four and eight year old at home, right, you just can’t cope. Yeah they’re emotionally exhausted”.[HCP 003, Nurse, Tertiary Care (Other)]
3.2. COVID-19 Exacerbating Existing Socio-Economic Inequalities
“Where they’ve got resources, they’ve done well. I think that our families that where it’s a combination of poverty, distance, education, poor mental health, have suffered. Now is that true pre-COVID? I’d say that combination of things has always conspired to make pain management very difficult.”[HCP 006, Physician, PMCPC]
“We do have some families that are lower SES [socio-economic status], so in those families it was more striking for them. More quickly they had issues around getting food and in some cases, being able to pay their bills or things like that because some of them lost their jobs. For families that either had parents lose their jobs or have already difficulty or insecurity in terms of food or proper shelters, that [pandemic] really impacted them and impacted their health.”[HCP 011, Clinical Psychologist, PMCPC]
“I think it all boils down to socioeconomic status. Some families have less ability to afford help for health and generally have less access to services in the community. So the patients that have higher SES, their parents have the computers for virtual right away, less of a delay. Their parents are familiar with virtual, they logged on. Their parents have jobs that offices will allow them to work at home, so they were at home. And on the flip side the families with lower economic status where their parents might have a labour job or something and were not in the house or they didn’t have access to childcare, they didn’t have family members or hired help, they were often not available for appointments, hard to get a hold of them and help their child. They wouldn’t have time or energy; they would work all night and sleep all day. So it was really strikingly different, I am sure there are some in the middle.”[HCP 018, Physician, Intensive Rehabilitation Program]
- Theme 2: Impact of Changes to Healthcare System and Clinical Practices
“When there was a response to the pandemic that first began in March [of 2020], our clinic was told no ambulatory patients and no non-urgent patients […] Clinic basically shut down for about two months and I was redeployed to inpatient for two months.”[HCP 001, Physiotherapist, PMCPC]
3.3. Triaging of Care
“Initially our directive was that urgent and emergent meant that you would die in 7 days if you didn’t get seen. So that was the standard that truly at the beginning we could only see a patient if not seeing them put them at risk of dying within a week.”[HCP008, Clinical Psychologist, PMCPC]
“I think our clinic was in a similar boat to [other pain clinics] but it felt like our clinic was one of the last to be granted permission to kind of resume because we have ‘chronic’ in our title not ‘acute.’”[HCP 001, Physiotherapist, PMCPC]
“Working in mental health, we see that if our patients are actively suicidal that would qualify. But in a tertiary care hospital setting the way of viewing that criterion was often based on more of a medical-physical view of urgency. But working in mental health there’s always that stress when you do have patients who have expressed suicidal ideations that actually if someone’s calling in saying they’ve become way more depressed, they’re really not functioning and they’ve lost their support system and they’re in a very challenging situation, there was some advocacy that had to be done and within the organization to say truly we need to reach out to those patients because that was a significant concern clinically”.[HCP 008, Clinical Psychologist, PMCPC]
“I think the piece that would have been more helpful for us is that idea of urgent care versus chronic care. We had the capacity to start a month before we did, and it was because of the wording of the hospital mandate or the Department of [Public] Health mandate, it was like you’re only allowed to do urgent care […]. So that was a little bit frustrating, that delay. And then on the other side I think that the hospital and the Department of [Public] Health wide “urgent care only” restriction put us back by a month.”[HCP 020, Clinical Psychologist, PMCPC]
3.4. Access to Services
“Even though you were opening the building, we’re only allowing certain people to come in so we have to pick only the worst situation, the ones that were suffering the most, knowing that the ones that were not suffering the most probably in a couple of months would then be suffering the most. So we’re constantly catching up on people that are not getting timely access to medications and prescriptions. We are only dealing with the most emergent problem so it’s like always putting out fires but never getting to the point where we can manage. So it’s a big problem.”[HCP 018, Physician, Intensive Rehabilitation Program]
“We definitely had kids come into our service as a direct result of COVID-19 surgical delays. So delays in surgeries, I think [our hospital] cut surgeries by 70–80%, so we had kids who were not emergency surgeries, they were elective, not urgent, but required, and they developed pain as a result of waiting. So we have a complex care child that has hip dysplasia that had hip surgery, and he ended up going on narcotics, like waiting… crying up all night waiting for his surgery. So we’ve had a few of those referrals that we wouldn’t have otherwise gotten, that are developing pain as a result.”[HCP 003, Nurse, Tertiary Care (Other)]
“What was so difficult and so frustrating was trying to come up with the safe discharge plan, and so there’s a few more cases where we actually ended up admitting a patient just because we literally could not get them what they needed successfully […] I just remember this child who is very spastic, and their home care almost stopped coming, they didn’t get physio, they didn’t get—it was enormous, it’s like respite care kind of dropped by the wayside. And the family brought him in and he was so much worse than he’s been a month before, just pain from spasticity and we actually did admit him to hospital because the parents were exhausted, they had no respite, they couldn’t get their regular home care, they couldn’t get the regular physio, but it was just so all-encompassing that in the end the best thing for the child was to bring him into hospital because that was the only way we could actually sort out some of the issues.”[HCP 014, Physician, Pediatric Emergency Department]
“Children with pain are already socially isolated, they’re already vulnerable, and I was worried about the loss of supports that many of these kids really needed in the community. So even though we carried on with virtual visits, a lot of them, their community supports stopped. So they had home physio, they had community physio, or they had different supports through the school system at their school, counsellor at their school that literally stopped. So that was really difficult, and I was concerned about it.”[HCP 003, Nurse, Tertiary Care (Other)]
“A lot of kids [with developmental disabilities] were receiving therapy at school. So they weren’t in school. They weren’t wearing braces, aren’t getting their normal contact with a therapist, [doing their] stretching, eating, routine.”[HCP 018, Physician, Intensive Rehabilitation Program]
“One of my first concerns was that for kids that were on a fairly structured plan to return to function, and we were working closely with families and kids to increase their physical activity, school attendance, all those things and suddenly treatment stopped right? So we were trying to get them walking, whatever that treatment looked like, and actually for many of the kids their goals stopped too, they were working towards something, joining a sports team, being able to attend Comicon, all sorts of cool goals that the kids had that were suddenly off the table. And all sorts of treatments and interventions for going out, returning to function, that suddenly like very quickly changed. So one of my first concerns was about how do we maintain the status quo, you know not falling backwards in terms of their function but even just regrouping and hoping the families were able to maintain some semblance of routine, sleep, like all those things we work on were changing right?”[HCP 008, Clinical Psychologist, PMCPC]
- Theme 3: Shift to Virtual Care
“So then of course when the pandemic hit us […] we felt a little bit “oh god we have to make a sudden change”. So we were very assertive about that change and we sensed that obviously this [pandemic] is not going to be an issue that’s resolved so let’s just get on it and make it happen. So very quickly we basically flipped what we were doing in person—which was our usual kind of initial multi-d[isciplinary] assessments, interdisciplinary follow-ups, psychoeducational groups, different physio, OT, psychology, psychiatry sessions—into a virtual world.”[HCP 007, Nurse Practitioner, PMCPC]
3.5. Role of Institutions
“We were told we could not do any clinics at all. Our administration was not particularly helpful or supportive in setting up virtual access. They weren’t letting us use Zoom or Skype or anything like that initially. And weren’t interested in discussing it at that time. I guess it must have been about six weeks, finally started distributing a version of Zoom for Healthcare, which they felt was more secure. And allowed us to start booking initially some recheck appointments virtually.”[HCP 015, Physician, PMCPC]
“Well something that would’ve taken five years for [the hospital] to do across the organization, happened in a week. So all of a sudden we just leveraged everything and forgot about the red tape you normally have to go to, you have to go through committees. […] The amount of red tape you have to go through to implement something is way too long sometimes, and so we proved that really it shouldn’t have to take five years. I think there was like a virtual committee looking at a five year plan and that got accelerated to a two day plan so that was awesome.”[HCP 003, Nurse, Tertiary Care (Other)]
3.6. Benefits and Limitations of Virtual Care
“We figured out a way to do the psychoeducational groups [virtually] so that it provided more equality amongst our patient population geographically. Our interdisciplinary follow-ups could very well continue virtually if we wanted them to, so it provides us with much more flexibility and now that we’ve gotten it figured out its much more timesaving, it’s not as time consuming. In person it’s little things like having to check in at the desk, and park, and do all these things it takes time, people are late. Virtually we have found actually it worked out and with our patient population, we’ve noticed that there’s less cancellations, there’s less being late to the appointment because they can do it out of the comfort of their own home.”[HCP 007, Nurse Practitioner, PMCPC]
“When you look at physio, via passive modality versus active right—like put an ultrasound on, TENS machine on or whatever versus give me some exercises and movement. And often times where people get stuck is when they do too much passive, not enough active. But if you’re doing virtual it’s almost all active. It may be because it forces you more into that more active thing and you are doing the exercises in your home environment. When you practice your exercises in the gym and in physio you’re like “am I doing it right at home?” Whereas if you’re doing it at home and practiced with somebody guiding probably going to be more likely to be just doing it at home because you practiced it.”[HCP 006, Physician, PMCPC]
“Families with very low levels of socioeconomic advantage or disadvantage typically live in small cramped quarters like trailers. And we often found that families would have to move outside, they would be subject to the rest of the family members coming and going, noise, no privacy, so we had poor connections, we had poor lighting, we had a lot of family members coming and going, lack of privacy, very difficult to do physical exams under those circumstances.”[HCP 006, Physician, PMCPC]
“We’ve done our best to try to do assessments virtually, but I found that the biggest challenge there actually is technology quality. So whether it is our end or their end, the cutting out and the freezing, very difficult. Second thing is the family on the other end’s awareness of how to use the technology appropriately basically having appropriate lighting and being able to position the screen in a way that works or even knowing where their camera is on their device. So you’re like show me both arms and you’re seeing [only one], and you’re like okay go down, over, in, out, show me both hands. They can’t do that.”[HCP 001, Physiotherapist, PMCPC]
3.7. Hybrid Model
“So by the end of September, we will be at the point where we are literally replicating everything that we did physically, virtually, and we are now doing a hybrid. Our new patients they come in and get an in-person physical exam, but the other half the team is virtually chatting with them within the same room and the same appointment. And then we can help some patients come in for in-person physio. So we are basically replicating almost the exact same, as of the end of September, the same as what we did before the shutdown.”[HCP 007, Nurse Practitioner, PMCPC]
“I would hazard a guess and say we’re never going to go back to primarily in-person appointments. I think virtual will continue to be used. And the extent of that, I’m not entirely sure, because there is something nice about having my in-person contact, but I think it’ll definitely as far as accessibility goes, improve that for a lot of youth in the province. As far as how that could change things for youth with chronic pain after the pandemic, I think it just gives them more tools, right, and more accessibility.”[HCP 021, Clinical Psychologist, PMCPC]
5. Strengths and Limitations
6. Conclusions and Future Directions
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Healthcare Provider Interview Guide
|Instructions for the interviewer:|
- Introduction:The goal of this interview is to understand how the COVID-19 pandemic (coronavirus) has been impacting your work caring for young people living with chronic pain. I will ask you some questions and you can tell me details about your current experience, usually the interview takes around 30–45 min. The interview will be audio recorded and kept private. Your name or any other identifying information will not be included during the recording, except your voice. Participating or withdrawing from the study will not have any effect on your employment. You can stop the interview and withdraw from the study at any point. You may contact the Research Coordinator to request your interview data be removed from the study before analysis begins. Please let me know if a question makes you feel uncomfortable or if you would like to take a break. Do you have any questions before we begin?
- Can you tell me a little bit about your chronic pain practice and how your practice has changed during COVID-19?
- i.e., set up, interdisciplinary team members, switch to virtual care, decrease capacity, triage, etc.
- How did you receive information and education about COVID-19?
- How comfortable did you feel with the information you received?
- What information did you find the most helpful?
- What were some of your main concerns about COVID-19, both personally and professionally?
- What types of concerns did you have related to chronic pain management for your patients during the COVID-19 outbreak?Probes:
- How were healthcare and related services affected by COVID-19?
- What types of disruptions in services occurred due to the COVID-19 outbreak or the social distancing requirements?
- (If providing in-person care) What was it like to provide health care/chronic pain services in the hospital/community during this time?Probes:
- How was your access to personal protective equipment (e.g., masks, gowns, etc.)?
- Did providing this care impact your mental health (i.e., anxiety, morale, etc.)
- How has your normal workday or work routine been affected by COVID-19?Probes:
- What types of changes were there in patient care or care management/coordination?
- What types of policy and procedural changes did you experience?
- If applicable—describe your experience with how these changes were implemented. What were some of the challenges or barriers? Were there any positive outcomes of these changes?
- How do you think that infection control measures impact children with chronic pain and their families?Probes:
- For example, use of PPE, social distancing, impacts on families related to the delivery/access to care?
- How did the families you work with respond to the COVID-19 outbreak?Probes:
- What types of problems did families experience in managing the health and other needs of a child with chronic pain during this time?
- Do you have any examples of a time when your patients’ care or treatment plan was disrupted due to the COVID-19 outbreak?
- How did you observe children with chronic pain and families coping with the pandemic experience?Probes:
- Was there anything that surprised you about the way children and families coped?
- Were there any differences between community/hospital settings that you noticed?
- What do you think would have been helpful to support families in their coping?
- How do you think this experience will affect children with chronic pain and their families when this pandemic is over?
- How have you and your colleagues coped during this time?
- What could be done to better support you and your colleagues to provide care in this type of environment?
- How do you think this experience will affect your colleagues or your workplace when this pandemic is over?Probes:
- How do you think this experience will affect delivery of care to children and adolescents with chronic pain and their families when this pandemic is over?
- What do health care professionals who work with children with chronic pain need to manage during a pandemic such as COVID-19?
- As a provider, what resources did you use to guide your practice?
- What was most helpful?
- Knowing what you know now, is there anything you would recommend to other health care providers who may be working within the context of a pandemic such as COVID-19?
- How has your normal workday or work routine been affected by COVID-19?Probes:
- What are key messages for best practices, policy development and emergency planning?
- Do you have anything else to add that we haven’t covered yet? Are there any specific topics you would like to discuss as we are wrapping up this interview?
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|HCP Type||n (%)|
|Child Life Specialist||1 (4.8)|
|Clinical Psychologist||4 (19.0)|
|Years of work with pediatric chronic pain patients||n (%)|
|Less than 5 years||5 (23.8)|
|5–10 years||7 (33.3)|
|10–15 years||5 (23.8)|
|More than 15 years||4 (19.0)|
|Work setting||n (%)|
|Community-Based Practice||3 (14.3)|
|Emergency Department||4 (19.0)|
|Tertiary care (Intensive rehabilitation program)||2 (9.5)|
|Tertiary care (Multidisciplinary chronic pain clinic)||11 (52.4)|
|Tertiary care (Other)||1 (4.8)|
|Province or territory of work||n (%)|
|British Columbia||3 (14.3)|
|Nova Scotia||2 (9.5)|
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Killackey, T.; Baerg, K.; Dick, B.; Lamontagne, C.; Poolacherla, R.; Finley, G.A.; Noel, M.; Birnie, K.A.; Choinière, M.; Pagé, M.G.; Dassieu, L.; Lacasse, A.; Lalloo, C.; Poulin, P.; Ali, S.; Battaglia, M.; Campbell, F.; Harris, L.; Mohabir, V.; Nishat, F.; Benayon, M.; Jordan, I.; Stinson, J. Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study. Children 2022, 9, 230. https://doi.org/10.3390/children9020230
Killackey T, Baerg K, Dick B, Lamontagne C, Poolacherla R, Finley GA, Noel M, Birnie KA, Choinière M, Pagé MG, Dassieu L, Lacasse A, Lalloo C, Poulin P, Ali S, Battaglia M, Campbell F, Harris L, Mohabir V, Nishat F, Benayon M, Jordan I, Stinson J. Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study. Children. 2022; 9(2):230. https://doi.org/10.3390/children9020230Chicago/Turabian Style
Killackey, Tieghan, Krista Baerg, Bruce Dick, Christine Lamontagne, Raju Poolacherla, G. Allen Finley, Melanie Noel, Kathryn A. Birnie, Manon Choinière, M. Gabrielle Pagé, Lise Dassieu, Anaïs Lacasse, Chitra Lalloo, Patricia Poulin, Samina Ali, Marco Battaglia, Fiona Campbell, Lauren Harris, Vina Mohabir, Fareha Nishat, Myles Benayon, Isabel Jordan, and Jennifer Stinson. 2022. "Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study" Children 9, no. 2: 230. https://doi.org/10.3390/children9020230