Abstract
Children who experience a severe burn injury not only require acute medical care but may also need ongoing rehabilitation. To mitigate the potential long-term consequences of scarring and the impact of scarring on their everyday lives, children may be expected to use a variety of time-consuming and multi-component non-invasive scar treatments (such as pressure garments and silicone gels). These treatments may pose unique challenges for children and their caregivers. With limited research previously addressing how Australian children navigate the use of scar treatments at home, this study aimed to develop a grounded theory of children and their caregivers’ engagement with non-invasive burn scar treatments. Using a constructivist grounded theory approach, interviews were completed with 20 caregivers and 7 children, and a theory of children and their caregivers becoming experts in the use of non-invasive burn scar treatments was developed. Through persistence and flexibility, they continued to develop expertise. Engaging with scar treatments was an evolving process over time for children with burns and their caregivers. Theoretical categories identified included ‘making it work’, ‘finding the balance’ and ‘seeking reassurance’ and highlighted the remarkable strengths and adaptability of children and their caregivers. Through trial and error, children and their caregivers developed their own unique strategies for engaging with scar treatments. These insightful results may inform the development of interventions to support children and their caregivers’ day-to-day engagement with non-invasive burn scar treatments and guide health professionals recommending these treatments.
Introduction
Up to 72% of children and adults who experience a burn develop hypertrophic scarring (Lawrence et al., 2012). Burn injuries have the potential to cause not only short-term pain and distress for both the child and their family but may also present long-term physical and psychological consequences that impact a child’s health-related quality of life and developmental milestones. There are a range of physical and sensory symptoms frequently experienced by children with burns including changes to the appearance of their skin (such as colour, texture and tightness) as well as pain and itch (Jones et al., 2017; Simons et al., 2018). In addition to sensory symptoms, children may experience long-term psychological issues including difficulties adjusting to the appearance of their burn and challenges returning to their previous daily activities (e.g. playing, learning and school activities) (Maskell et al., 2013; McGarry et al., 2014; Simons et al., 2016).
Children at risk of developing scarring after burns often use a range of non-invasive scar treatments prescribed by treating health professionals, such as pressure garments, silicone gels, moisturisers, medications, taping, splints, exercises, or massage techniques (Ault et al., 2018; Finnerty et al., 2016; Parry et al., 2020; Wiseman et al., 2019). Treating health professionals may recommend that children use a combination of these treatments simultaneously in order to achieve the best scar outcomes and return to usual everyday activities (Van den Kerckhove et al., 2001). These scar treatments may be time intensive. For example, pressure garments may need to be worn for up to 23 hr per day and may take up to an hour to apply (Ai et al., 2017; Atiyeh et al., 2013; Engrav et al., 2010). Complex regimens may also need to be followed and carried out by children and their caregivers (e.g. sunscreen applied, followed by waiting 5 minutes for it to be absorbed, then silicone gel applied, followed by waiting another 5 minutes for it to dry, and then a pressure garment applied). Given the complexity of scar treatment regimens, it is important to obtain a better understanding of children and their caregivers’ experiences of using these treatments.
While previous research has focussed on adults’ experiences of using pressure garments, more recent studies have also included caregivers’ experiences of using pressure garments with their child. A mixed-methods study conducted in the United Kingdom, using interviews with adults with burns and caregivers of children with burns, discussed several factors that might influence adherence to scar treatments, particularly pressure garments (Moiemen et al., 2018). These factors included social support to assist with treatments, the fit and tailoring of pressure garments, pain or uncomfortable feelings caused by treatments, the emotional impact of treatments and the physical or emotional security provided by pressure garments (Moiemen et al., 2018).
The burden of scar treatments can be substantial for families and impact on the use of these treatments. Some caregivers need to cease work to care for their child with burn scars, and extensive physical and emotional effort may be required by caregivers to support their child to adhere to pressure garments (Andrews et al., 2018; Jones et al., 2017). These findings align with those of a synthesis of qualitative studies on treatment adherence in children with long-term conditions, which highlighted the complex juggle faced by caregivers when trying to balance their child’s treatment needs with the priorities of the whole family unit (Santer et al., 2014). A randomised controlled trial (RCT) in children using non-surgical burn scar treatments found that children using a more complex multi-component scar treatment regimen adhered less consistently than children using a single scar treatment alone, suggesting that treatment burden impacts on use of these treatments (Wiseman et al., 2019). A range of stressors may be experienced by children and families in the rehabilitation phase that impact on their capacity to use scar treatments (McGarry et al., 2015).
No previous theories on children’s engagement with burn scar treatments (including a combination of treatments) have been developed. Furthermore, research has only just begun to consider the unique experiences of children, such as the factors influencing children’s adherence to pressure garments in the United Kingdom or interventions to optimise children’s adherence to scar treatments (Andrews et al., 2018; Killey et al., 2020; Szabo et al., 2016). Thus, the need to conceptualise how Australian children engage with one or more non-invasive burn scar treatments, particularly moisturisers, silicone gels and pressure garments, was identified by the authors. The aim of this study was to develop a grounded theory of children and their caregivers’ engagement with non-invasive burn scar treatments. This grounded theory may inform the development or use of interventions that support children’s everyday engagement with these treatments and guide future research.
Methods
Design
A constructivist grounded theory approach was chosen to help understand the processes children and caregivers undertake to engage with non-invasive burn scar treatments on a daily basis, particularly when using a combination of scar treatments simultaneously. In contrast to other types of qualitative research, grounded theory methodology is focussed on the generation of theory to conceptually explain processes or actions of a phenomenon of interest, fostering an understanding of how these concepts are interconnected (Charmaz & Thornberg, 2021). It is for this reason that grounded theory is useful when little is known about a phenomenon of interest, as in the case of the current study.
Constructivist grounded theory has unique underpinning philosophical assumptions. These assumptions include the existence of multiple realities, the construction of data through the researcher’s interactions with the data or participants and the consideration of the impact of the researcher’s priorities, perceptions and actions (Birks et al., 2019; Charmaz, 2014). Furthermore, constructivist grounded theory considers the situations and contexts within which the data is collected (Charmaz, 2017).
By using a constructivist grounded theory approach, the researcher acknowledged that they were implicit in the data collection and analysis process, with the developed theory a co-construction of the researcher’s interactions with, and understanding of, participants’ views (Birks et al., 2019; Charmaz & Thornberg, 2021). Given the importance of researcher positioning, the research team (JK, MS, SP and ZT) took a reflexive stance, employing strategies to continually consider the impact of their own beliefs, privileges and perspectives throughout the process of research design, data collection and analysis (Charmaz, 2014). The first author (JK), with experience working as an occupational therapist with adults with burn injuries, initially held the view that caregivers would discuss scar treatments as very challenging to use with their child at home. SP was an experienced qualitative researcher and occupational therapist but had no previous experience working with people with burns, enabling the data to be analysed without pre-existing beliefs about the way people experience non-invasive scar treatments. However, SP held a belief that higher education levels may lead to increased engagement with treatments. ZT and MS were both experienced occupational therapists and researchers who have previously worked (ZT) and currently work (MS) clinically, and both currently work in research with adults and children with burn injuries. They continually reflected on how their knowledge and experiences may have influenced the research process. This included ZT’s prior clinical belief that combined pressure garment and silicone therapy was beneficial, and towards the end of recruitment in the current study, knowledge of RCT findings in the study setting. These RCT findings indicated no benefit of combined pressure garment and silicone gel therapy treatments compared to each treatment alone in children with or at risk of burn scarring.
Study Context
Eligible participants were identified through a specialist teaching paediatric burn centre in a major metropolitan Australian city. The first author was embedded within the multidisciplinary burns team in the study setting in a research capacity, by attending weekly team meetings and clinics where children and families were recruited (see Supplementary File 1 for further information on the study context).
The relevant ethical clearance was obtained from the Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC number: HREC/15/QRCH/249) and the University of Queensland Human Research Ethics Committee (clearance number: 2016000558/HREC/15/QRCH/249). Caregivers provided informed written consent to participate, and caregivers also provided written consent for all child participants. Child participants also provided verbal assent (children aged 8 years and older). Participants were reassured that no identifying information or data would be shared with their burns treating team (doctors and allied health professionals), except if required by law, and transcripts were de-identified prior to coding by a clinician researcher (MS).
Participants
Children eligible for inclusion in the study were aged between 8 and 18 years and had a burn injury to any part of their body currently requiring (or likely to require) one or more non-invasive scar treatments (such as pressure garments, silicone gel, exercises and splinting). Children likely to require non-invasive scar treatments were those with an expected burn healing time of greater than or equal to 17 days, which was the timeframe used by the clinical team to determine those at risk of scarring. Caregivers of children all ages (0–18 years) using non-invasive scar treatments following a burn injury were also eligible. Children who were not eligible for inclusion were those who did not have a guardian or caregiver to provide informed consent. Children or caregivers who were unable to speak English were also not eligible for inclusion as the interviewer was not fluent in speaking languages other than English and interpreters were only available for clinical consultations. Children and caregivers (who had previously consented to be contacted regarding research opportunities) were approached whilst attending an appointment at the burns centre, via phone call or after being identified by the multidisciplinary team.
Data Collection and Analysis
Data collection and analysis included starting with an initial broad research topic, recruiting participants, collecting data through interviews, initial coding, focussed coding, theoretical sampling by recruiting and interviewing further participants to refine and test focussed codes and determining the properties of tentative theoretical categories (Charmaz, 2014). This constant comparative method, with concurrent data collection and analysis, continued until the categories reached theoretical saturation (with the research team being satisfied that the category properties were sufficiently understood), and the grounded theory was developed (Charmaz, 2014). As the research team were specifically interested in the substantive area of children using non-invasive burn scar treatments, a substantive theory was developed rather than a formal theory (Glaser & Strauss, 1967; Urquhart, 2019).
The interview guide in Supplementary File 2 outlines the initial broad research questions and open-ended prompts used to ensure that participants were able to talk about topics of importance to them (Charmaz, 2014). While the term ‘adherence’ is widely used in the literature and does consider whether a patient has agreed to a health professional’s recommendations, unlike the previously used term ‘compliance’, the research team felt it was important to avoid using potentially stigmatising language (Park et al., 2021; Sabaté, 2003).
The interview guide was used with the first three participants and thereafter was continually adapted as interviewing progressed to follow further lines of inquiry as part of the process of theoretical sampling. For example, the process of refining the focussed code ‘embedding into routines’ was enabled through interview questions such as ‘Could you tell me about your daily routines and whether they were important for your child’s scar treatment?’. Questions about the actions and processes related to incorporating treatments into daily routines were not included in the initial interview guide; however, after the first few interviews, it became apparent that this was an important line of inquiry. Another example includes the use of questions around children’s and caregivers’ decision-making when faced with scar treatments potentially impacting important daily activities. Questions included, ‘Can you tell me about a time when your scar treatment impacted on your ability to do something you wanted to do?’ and ‘What did you decide was most important to you?’. This led to further development of the theoretical category ‘finding the balance’ and the focussed code ‘making choices’. Supplementary File 2 includes examples of additional questions used as part of the process of theoretical sampling for the development of emergent theoretical categories.
Interviews were carried out by the first author (JK) in participants’ homes (n = 8), at the hospital precinct (n = 17), or via phone when requested by families (n = 2). Interviews ranged in length from 12 min to 1 hr and 26 min (average length 31 min). Children were given the option of having their caregiver present for the interview and all children opted for this. Interviews were audio recorded and verbatim transcripts developed.
Initial sampling was used to gather preliminary interview data and develop initial codes (in the form of gerunds) through line-by-line coding. This was followed by theoretical sampling with concurrent data collection and analysis, using constant comparative methods, whereby reoccurring initial codes were raised to focussed codes and compared against new and existing data and codes. For example, initial codes such as ‘incorporating garments into child’s routine’, ‘getting into a routine’ and ‘becoming part of existing routines’ led to the development of the focussed code ‘embedding into routines’. The focussed codes were then used to inform tentative theoretical categories, which were further tested as required to achieve theoretical saturation (e.g. the focussed code ‘embedding into routines’ formed part of the process of the theoretical category ‘making it work’). Ongoing memo writing, reflexive journaling and weekly meetings (with at least two members of the research team) enabled theoretical saturation to be achieved (see example coding in Supplementary File 3). Half of the interviews were independently coded by two researchers (JK and MS), with two initial interviews coded independently by four researchers (JK, MS, SP and ZT). Recruitment occurred between two phases (December 2017–February 2018 and August 2019–December 2019). A gap was required to ensure that the interviews were adequately coded and focussed codes were tested through constant comparative analysis and extensive memoing. Furthermore, recruitment of children 8 years and older was slower than for younger children as mostly younger children attend the study setting for treatment (Stockton et al., 2015).
While theoretical sampling differs from other approaches by sampling to fill theoretical categories (rather than to represent a population), the research team decided that collecting socio-demographic and clinical data would assist in describing and understanding the patient sample used and the situation or context in which the grounded theory was developed (Charmaz, 2014). Therefore, this information was collected via a caregiver survey and through accessing the child’s medical records. Data collected on the child participants included age at time of interview, gender, ethnicity, time post burn injury at the interview, percent Total Body Surface Area burn, location of the burn, the presence of a scar contracture and type of scar treatments used. Caregiver demographic data collected included age, gender and education level.
Quality in Constructivist Grounded Theory
Consideration was given to the four key quality criteria related to constructivist grounded theory, including credibility, originality, resonance and usefulness (Charmaz, 2014). Credibility was addressed through the process of continual memoing, regular team discussions and theoretical sampling to follow emerging lines of inquiry, in addition to the research team undergoing regular reflections. The developed grounded theory may provide original insights (originality), as literature searches prior to the study identified no previous theories on children’s and families’ engagement with non-invasive burn scar treatments. Resonance of the grounded theory may be seen through the way in which the theoretical categories were deeply explored to capture rich data and through the process of theoretical sampling. Participants reported that the developed theoretical categories resonated with their experiences, such as the focussed codes of ‘embedding into routines’ and ‘using distraction with young children’ (which will be further discussed in the Results section). Lastly, the usefulness of the developed grounded theory is demonstrated through the recommendations to guide health professionals’ future clinical practice, and the relevance for children and families using non-invasive burn scar treatments will continue to be evaluated (Charmaz & Thornberg, 2021).
Results
Overall, 71 families were initially contacted regarding participation in an interview. Of these families, 21 were recruited; however, only 20 families were able to be interviewed as one family was lost to follow-up; and 21 families (including three Aboriginal and Torres Strait Islander families) were initially interested in participating but were unable to be contacted again, via a follow-up phone call, to further discuss participation in an interview. Additionally, of those contacted, 10 families were not eligible to participate and 19 families declined to participate. Reasons for exclusion were due to the child not currently requiring or likely to require non-invasive burn scar treatments (n = 5), the caregiver not being able to speak fluent English (n = 4), or the child not having a burn injury (n = 1). Families declined to participate due to not wishing to participate in an interview (n = 6), social stressors (n = 3), or were too busy (n = 10). No children approached were excluded due to lack of a guardian or caregiver to provide informed consent.
Interviews were completed with 7 children with a burn injury and 20 caregivers of children with a burn injury. Socio-demographic and clinical characteristics of child and caregiver participants are reported in Supplementary File 4. In summary, children who were recruited had a median age of 4 years (IQR 2–9.25) and 11 (55%) were male. The seven children who met the criteria to be interviewed were aged between 8 and 14 years. Children were predominantly of Anglo/European ethnicity (n = 15, 75%). Caregivers interviewed were predominantly female and had a median age of 37 years (IQR 33.5–40.5).
The constructivist grounded theory developed is a substantive theory of children with burns and their caregivers becoming experts in their use of non-invasive scar treatments. This theory highlights how children and their families are persistent and flexible in their approach to incorporating scar treatments into their daily lives after a burn and become increasingly confident over time.
Three theoretical categories developed as part of the grounded theory included ‘making it work’, ‘finding the balance’ and ‘seeking reassurance’ (see Figure 1). The theoretical category ‘making it work’ included the focussed codes ‘embedding into routines’, ‘using distraction with young children’, ‘keeping it simple’ and ‘personalising treatments’. ‘Finding the balance’ included the focussed codes of ‘making choices’, ‘a tipping point’ and ‘becoming easier over time’. The last theoretical category, ‘seeking reassurance’ included the focussed codes ‘valuing face-to-face interactions’, ‘searching online’, ‘believing in scar treatments’ and ‘worrying about the future’. A grounded theory of children and caregivers becoming experts in the use of non-invasive burn scar treatments.
Engaging with scar treatments was an evolving process over time for children with burns and their caregivers, leading to them becoming experts in the use of their own burns scar treatments through both flexibility and persistence. Over time, children and caregivers learnt how to best utilise scar treatments based on their needs and everyday lives and therefore continually became more confident and comfortable using these treatments. Initial challenges led to the development of their own personalised strategies for using treatments or opportunities to try a different treatment that was better suited to their needs. For example, an older child who strongly disliked the sensory feeling of a particular scar treatment opted for a different treatment that better suited their sensory needs.
Caregivers were focussed on the future and aimed to persist with scar treatments over time, seeing the treatment journey as a marathon rather than a sprint. When daily challenges arose, caregivers developed their own flexible approaches, deviating from the health professional’s advice, or alternating between different scar treatments they had been prescribed. Through their tenacity, caregivers developed their own strategies for engaging with scar treatments that best worked for their young child’s unique individual needs. The role of the caregiver varied depending on the age of the child. For example, caregivers of older children often expected their child to take responsibility for following scar treatment regimens with the caregiver providing minimal physical assistance, mostly giving verbal reminders and prompts to their child. Overall, it was through challenges, or trial and error, that children and their caregivers embarked on the process of becoming experts in their use of burn scar treatments which included refining their own unique strategies.
Making It Work
The actions and strategies used by younger and older children and their caregivers for making scar treatments work highlighted the tenacity and flexibility of the families interviewed and contributed to them becoming experts in their scar treatments over time. While older children described needing to consistently use treatments as annoying or inconvenient, they made treatments work for them and often persisted despite the challenges. I always do it [referring to touching the garment], it’s kind of annoying, ‘cause there’s little string bits that were coming out, so then, they annoy me, so I just pull ‘em out and then it disintegrates the whole thing. (Child)
Even with these challenges, this child continued to use the garment. I had to wear it all the time. Mum said to not even take it off. (Child)
Caregivers of young children were realistic about what scar treatments they could feasibly carry out with their child on a daily basis, meaning some days they decided to leave out treatments if they became too challenging to use. Some caregivers decided that if a scar treatment was going to cause their child too much distress or become too overwhelming, they would just skip it for the day or use something else. It was caregivers’ intuitive understanding of their own child’s needs, particularly young children, and their child’s tolerance levels that helped them to adapt scar treatments to ensure feasibility of use. Furthermore, caregiver leniency and flexibility appeared to contribute to more sustainable engagement with scar treatments over time. No, I think that’s probably it, just, um - - - a little bit of grace in – um, for yourself when the day and the process doesn’t go the way that you want it to or the way that you know that it should go. (Caregiver)
Embedding Into Routines
Crucial strategies employed by children and caregivers to make treatments work involved utilising daily routines. Families either modified existing routines to fit daily scar treatments or created new routines to facilitate regular engagement with scar treatments. Children and caregivers felt they were less likely to forget the use of treatments if they had a regular routine. And we’ll read a book and then we put the moisturiser on, and then carry on, so it just kind of slots into our routine. (Caregiver)
In addition to having a consistent routine, some caregivers discussed having treatments easily visible, as a reminder to use. For example, one caregiver kept the tube of silicone next to the bath as a reminder to apply it after their child’s bath each day. Adapting routines was necessary when changes occurred, for example, as a child’s development progressed. Um, and then I think yeah, that kind of is – establishment of routine, which you know, for us, I guess we had to change from one routine to another, after she toilet trained. So, we had to adjust our processes, so - - - a little bit of trial and error about what process works, um, is helpful. (Caregiver)
Changes in established routines were reported to negatively impact the use of scar treatments, such as being in a different environment, going away on family holidays, spending time at a family member’s house, or attending day care. One child discussed how she needed to be at home or in an appropriate environment for her caregiver to apply scar treatments to her back. So that was hard… cause like if we're out all day doing other things… we couldn't really do it. (Child)
Using Distraction With Young Children
Caregivers of young children used a range of distraction techniques individualised to their child for making scar treatments work, and this contributed to caregivers becoming experts in using treatments with their child over time. Distraction techniques may have included watching YouTube (online videos), engaging their child in reading a book, using an iPad, playing with toys, or participating in anything that was engaging for their child. These strategies made it easier for caregivers to carry out scar treatments with their child. … then I pick her up or her mum picks her up and we try to distract her with something, a toy or anything like that or a video on the computer, or YouTube - - - or we take her in the room and play with her and then she’s distracted easily from it and then she forgets. (Caregiver)
Distraction may have been used whilst carrying out scar treatments, such as to keep a child still whilst applying silicone and a toe sock to their foot, or during the day when the child’s tolerance for persisting with scar treatments declined. Caregivers often had more than one strategy ready to use for distraction, with one family borrowing extra toys and books from friends.
Keeping It Simple
Keeping it simple, or reducing the complexity or number of treatments required, was described as making scar treatments easier, or ‘making it work’, by both children and caregivers (approximately 10 families). Participants appreciated the ease of applying scar treatments that were quick and simple to use, such as a single silicone gel. Furthermore, having only one treatment to use was seen as helpful. But she’s just got the one now, which is good, so… and she’ll just put that on overnight. And yeah, it’s easy. (Caregiver)
In contrast to the simplicity of silicone gel, some participants discussed challenges with using multiple treatments involving several steps. Children voiced frustrations regarding necessary waiting time in between treatments (e.g. needing to wait for the moisturiser to dry before the silicone gel is applied). One caregiver described their child’s dissatisfaction with multiple treatment steps. Yeah cause that was his thing. I’ve gotta do this and this and this and this. Why can’t it just be like, put it on, bang, done. And I’m like yep, mate. (Caregiver)
Personalising Treatments
The process of personalising treatments contributed to making scar treatments work, with health professionals using strategies to personalise or tailor treatments based on a child’s individual needs. Caregivers described how occupational therapists personalised scar treatments for children with burns, giving children ownership of their treatments and engaging them in the process. Children were given the ability to choose the colours of their pressure garments, and both the child and caregiver had input into the design of their pressure garments. Furthermore, occupational therapists sometimes created social stories for children or used a child’s favourite movie character to help facilitate engagement with treatments. Caregivers felt that personalisation of scar treatments had a positive influence on their child’s engagement with scar treatments, particularly at home.
Finding the Balance
Challenging decision-making was faced by caregivers using burn scar treatments with their children, due to important competing priorities. With a range of priorities arising, children and caregivers experienced a constant juggle to balance the use of scar treatments.
Making Choices
Part of the process of ‘finding the balance’ involved children or caregivers making daily choices about what to prioritise. Children often found scar treatments inconvenient or disruptive, which at times impacted their daily decisions about what to prioritise. Children were clear on what treatments they liked or disliked, and if they disliked a particular scar treatment, they may have either ceased the treatment, used a different treatment, or prioritised other activities. At times, treatments interfered with daily activities that were important to the child or caregiver, such as playing a football match, dancing, or participating in an outdoor activity. Caregivers of younger children were often required to decide between using scar treatments or prioritising the progression of their child’s developmental milestones or ability to engage in their usual daily activities (such as play-based activities). For one family, their young child would not use their affected hand when wearing a pressure glove. This family decided that it was more important for their young child to use their hand for developmental tasks rather than wear the pressure glove to manage scarring. … I wonder whether the gloves are the best thing when they are so little… (Caregiver)
This difficult decision-making also involved caregivers juggling their child’s emotional distress with the use of scar treatments. … and ah, sometimes, sometimes when she gets hysterical and by hysterical I mean that she is being unreasonable - - - we take the garment off for a small while and let her play and keep the moisturiser on, let her play and then maybe feed her at that time so that she can come back to normal and then put the garment back on again. (Caregiver)
Families who had been given multiple scar treatments to use by health professionals at times needed to make choices about which treatments they were going to prioritise. No, I still use them, um I sort of um I randomly use different stuff, every night is different because I find if I leave his toe socks on constantly it, it annoys him ‘cause it gets really tight around his little ankle. (Caregiver)
A Tipping Point
Children and caregivers discussed important timepoints or circumstances that may have impacted on their decision-making and priorities, therefore causing them to reduce or cease use of scar treatments. The first key timepoint was in the initial weeks of commencing scar treatments, with caregivers and children describing this period as the most challenging and when concerns, such as adverse events related to scar treatments, were likely to occur. Some children and caregivers described needing to cease the use of scar treatments (such as pressure garments, splints, or even silicone gels) during the early weeks due to adverse events. I have a sock that I’ve got to wear. But it like, it was causing like pressure sores, kinda thing. I wore it for like the first three weeks and then, it just started like causing a really big lump - - on like the top arch of my foot - - - so I stopped wearing that. (Child)
The second key timepoint appeared to occur several months after commencing scar treatments. Some children and caregivers described becoming fed up with using treatments after several months or having less motivation to continue using treatments. At times, this appeared to be due to competing priorities such as needing to take a pressure garment off for a dance concert or school photos, while other times, it may have been that they simply forgot. Yeah, she just got sick of wearing it I think. And she had all these dance things that she didn’t want to wear it to, like performances and photo days and all that sort of stuff that she does - - - ‘cause she can’t wear them under her tights and stuff. (Caregiver)
While weaning the use of scar treatments did not appear to be an intentional decision by children and their caregivers, if there were no clear consequences or no observable change in appearance of the scar when wear declined, children and caregiver’s motivation to use scar treatments appeared to decrease.
Becoming Easier Over Time
Over time, children and caregivers became increasingly comfortable using scar treatments, which contributed to the overarching process of becoming experts in their use of scar treatments. Caregivers described initial challenges with using or applying scar treatments (such as pressure garments or silicone gels); however, these treatments became easier to manage over time. As time progressed, children and caregivers became more comfortable and confident using scar treatments and caregivers discussed developing their own techniques (such as for donning pressure garments).
Caregivers furthermore described how time helped to improve both the child’s emotional response to having their burn scar touched and the sensitivity in their burn scar. Yeah, they are very sensitive. Um it’s, yeah usually I wouldn’t have to, in the beginning we were having to hold them to, one of us would hold and the other would put the sock on. Um, but now I can sit on the couch and do it on my own. (Caregiver)
Seeking Reassurance
Caregivers sought out information from multiple sources for reassurance about their child’s progress and future outcomes or when they questioned their own decision-making. They also gathered this information to assist them in balancing or prioritising scar treatments versus other important daily activities. They sought information to reinforce their understanding of the types of scar treatments available and the efficacy of these treatments, in addition to identifying any other treatment options available for their child.
Valuing Face-to-Face Interactions
Caregivers spoke about the importance of face-to-face interactions when receiving education from hospital staff and making decisions about their child’s treatment. For caregivers, it was essential to speak face-to-face with doctors and the multidisciplinary team to discuss treatment decisions, and any other formats of education were generally seen as an adjunct to back up the verbal information they received. Furthermore, many caregivers spoke positively about their interactions with the hospital staff and appreciated when staff remembered who they were and took the time to sit down with them, answer questions and also explain the options. Um, and I think, that’s the only way and, I think, for them to sit with you and actually, this is what’s happening and this is why we’re doing everything and, yeah - - - that, kind of - - - stuff. (Caregiver)
Caregivers appreciated having familiar staff when possible and sometimes spoke about becoming overwhelmed when multiple unfamiliar staff entered the appointment room. Caregivers also spoke about the support and reassurance they received particularly from the occupational therapists, who helped provide caregivers with an understanding of the bigger picture. One caregiver spoke about the way in which the occupational therapists often acted as an advocate for their needs and ensured that the family had access to what they needed such as additional medication from the medical team for itch or information about a discharge date from hospital. But they [occupational therapists] were definitely the go between. We’ll just be your middle man. Which was wonderful. (Caregiver)
Families reported being generally satisfied with information received from the hospital via face-to-face sessions and felt that this was their preferred method of receiving information.
Searching Online
Whilst they appreciated face-to-face information, caregivers regularly searched for additional information via online searches to reinforce the information and education they had already received from health professionals at the burns centre. Caregivers often felt uncertain about what the burns journey was going to look like or wondered about alternative treatments for scarring or new clinical trials, hence searching online for further peace of mind. … because in the early days, I didn’t know how this was going to pan out, um, so I think I was just looking for something that would give me peace of mind that this was going to be okay, and it wasn’t going to be like life-changing or anything. (Caregiver)
However, while some online information was reassuring for caregivers, other information differed from what caregivers had received from the health professionals treating their child, causing further worry. Caregivers often questioned the trustworthiness of the internet sites and sources from which the information was obtained and therefore felt that searching online was not always helpful. … and so I always sort of questioned the validity of what I was reading. (Caregiver)
When it came to additional information on children’s burns and scarring, caregivers had differing preferences for the format of information such as email, online (via a trusted hospital website), or video. Many spoke about the written information they received from the hospital as a back-up which they only referred to if they wanted further clarification. Caregivers wanted information that was easy to find later, such as in their email inbox or on a hospital website. Caregivers spoke about emailing questions to hospital staff as they found this sometimes more convenient than making phone calls, allowing them to access the information and reply at their own pace.
Believing in Scar Treatments
Caregivers’ beliefs regarding the effectiveness of scar treatments appeared to impact on their process of seeking reassurance. Caregivers differed in their perception of the efficacy of scar treatments, with some questioning the efficacy of treatments whilst others believed the treatments had made a noticeable difference in their child’s scars. When it came to the progress of their child’s scarring, some caregivers discussed lacking a point of reference. Caregivers often spoke about having very little experience with burns or burn scars and not knowing what to expect in terms of scar improvement. They did not know what the progress of the scar should look like and they often questioned the efficacy of the scar treatment their child was using. That's the only thing like we don’t know, is it going well? Is it not going well? Is it kind-of… yeah we don’t really have a feel for that. (Caregiver)
While several caregivers questioned the efficacy of scar treatments, other caregivers and children spoke positively about the scar treatments, such as pressure garments or silicone gels, believing that they were helping to reduce the scarring and assist in fading the colour of the scars. Some caregivers felt that the silicone particularly improved the appearance of their child’s scars by helping the colour to fade, but some also discussed the potential influence of time. I mean…. It’s probably time as well but I think the [silicone gel]…. I’ve noticed….yeah… yeah… it has faded it. (Caregiver)
Worrying About the Future
At times, caregivers sought reassurance due to concerns about their child’s future. Caregivers discussed worrying about the future, particularly for female children, with particular concerns about the appearance of their child’s scar when they reached adolescence. Caregivers were worried that they may not have been doing enough to improve their child’s scars for the future; however, some were reassured by the knowledge that invasive scar treatments might be available to their child in the future (e.g. microneedling, laser, or other surgical reconstructions). But - if in years to come, like when she’s 16 or 17, and it just still does bother her I probably might look into other treatments, like skin needling or stuff like that. (Caregiver)
Caregivers of young children, particularly girls, seemed to worry about the potential psychological impact of their child’s scar appearance and whether their child may be bullied in the future when they started school. Overall, apprehension about the future appearance of their child’s scar and the potential impact of this was an area of concern for some caregivers and contributed to them continually seeking reassurance through searching online or talking to health professionals face-to-face during appointments.
Discussion
This study has provided new insights that informed the construction of a grounded theory of Australian children and their caregivers becoming experts in the use of burn scar treatments (including pressure garments, silicone gels and other modalities) to prevent or reduce scarring. Previous research has often focussed on the experiences of caregivers and pressure garment or silicone gel use alone; however, this study addresses the perspective of children and considers multiple scar treatments used in combination, as is often recommended by clinicians (Andrews et al., 2018; Jones et al., 2017). The current grounded theory of children and their caregivers becoming experts in their use of burn scar treatments included the theoretical categories ‘making it work’, ‘finding the balance’ and ‘seeking reassurance’. Children and their caregivers discussed how they found ways to best utilise scar treatments based on their, or their child’s, individual needs and priorities. Children often experienced competing priorities and at times had to choose between using scar treatments or participating in meaningful activities, such as dancing or football. Both children and caregivers experienced initial challenges with scar treatments; however, over time they found what worked best for them and became more comfortable and confident with their scar treatment use. By understanding these theoretical categories, tailored strategies and interventions can be developed by health professionals to assist in optimising the use of scar treatments and enabling better support for children and caregivers.
The findings of the current study present similarities to previous research on children with burns and research on children and adolescents using complex daily treatments for chronic conditions (such as cystic fibrosis and diabetes) (Nicolais et al., 2019; O'Toole et al., 2019). Caregivers in the current study frequently described the importance of incorporating scar treatments into their daily routines, and this was also reiterated by a UK study that interviewed caregivers of children using pressure garments for burn scar treatments (Andrews et al., 2018). Wanting to keep treatments simple, as discussed in the current study, has also been identified across studies in adolescent cystic fibrosis, with adolescents and caregivers wanting quicker and less treatments to use (Nicolais et al., 2019; O'Toole et al., 2019). These findings have implications for clinicians to consider the burden of treatment on families when communicating about scar treatment options for children and their caregivers.
The current study found that engagement with scar treatments often had crucial timepoints. For example, experiences during the first few weeks of commencement of scar treatments may have determined whether or not a child was able to persevere with scar treatments and the presence of adverse events may have led to cessation of treatments. Additionally, a tipping point was described at times, whereby other competing priorities for children, such as extra-curricular activities like football or dancing, may have contributed to decreased engagement with scar treatments. Both previous study findings in adolescents with cystic fibrosis and those in the current study indicate that if immediate negative consequences are not experienced, children and caregivers may begin to view treatments with less importance (Sawicki et al., 2015). These findings have particular relevance for clinicians, suggesting that education may need to focus on ensuring families understand the importance of continuing to use scar treatments even if ongoing improvements in scar appearance, or the way their scars feel, are difficult to identify. Discussions with clinicians should be encouraged as this may influence decisions to cease scar treatments or aid in determining an alternative treatment option (if children are experiencing adverse events), as the viewpoint of a trusted clinician has been identified as highly valued by patients with burns and chronic diseases (Ljungholm et al., 2022; Price et al., 2021).
Caregivers in the current study valued face-to-face provision of information and having open conversations with health professionals to ask questions and voice their concerns. Positive rapport with health professionals appeared to enable shared decision-making between caregivers and children, and health professionals, which led to a flexible approach to the use of treatment. Furthermore, allowing the child to be involved in decision-making regarding the type and design of scar treatments used was felt by caregivers to be important. While limited research exists currently, interventions incorporating components that promote a therapeutic alliance have demonstrated promising impacts in the context of exercise participation in cardiac and neurological conditions (Babatunde et al., 2017). Additionally, studies of both children and adults with asthma have acknowledged the potential for shared decision-making to improve engagement with treatment and patient-centred outcome measures; however, further studies are required to ascertain the effectiveness of shared decision-making approaches (Rivera-Spoljaric et al., 2014; Wilson et al., 2010).
Study Limitations and Future Recommendations
Children with burns were at differing stages of recovery and often relayed experiences of using different scar treatments at different points across their burn scar journey. Therefore, their recall of experiences from months earlier may have impacted the results and potentially changed their viewpoints on treatments used in the past. Furthermore, differences in the location of the burn or the presence of a scar contracture may have the potential to influence how children and caregivers engage with, or make decisions about, scar treatments, and this may be worth exploring in the future. Another limitation of the current study was the limited diversity in participant ethnicity particularly due to lack of availability of an interpreter, with the majority of recruited participants from Anglo European backgrounds. Aboriginal and Torres Strait Islander people were initially approached to participate; however, all were unable to be contacted subsequently to organise an interview. Representation of Aboriginal and Torres Strait Islander voices is needed, particularly given the rate of Aboriginal and Torres Strait Islander people admitted to Australian burn services during 2019 and 2020 was greater than double the rate of non-Indigenous people (Burns Registry of Australia and New Zealand, 2021).
Future research should explore the types of supports and resources that may improve the experience of using scar treatments for children and their families. Furthermore, future studies could conduct repeated interviews with the same children and caregivers across different timepoints of their scar treatment journey, to capture changes over time. The development and use of a screening tool that could be used both prior to the commencement of scar treatments and repeated over time may provide clinicians with a standardised approach for identifying factors that support (or alternatively hinder) engagement with scar treatments. This tool could be used as part of models of care that effectively improve both engagement with treatment and patient-reported outcomes.
Clinical Implications
It is important for health professionals to focus on child and caregiver priorities, and therefore take the time to discover what meaningful activities a child would like to return to after experiencing a burn (such as football, dancing, or swimming) and discuss strategies for navigating the return to these activities whilst also engaging with scar treatments as required. It may be useful for health professionals to discuss children’s and families’ daily routines when selecting and recommending treatments, to determine where and how scar treatments may fit into existing routines or how routines may be modified. An additional implication that may inform clinical practice includes the potential benefits of a follow-up phone call or telehealth appointment following provision of a new scar treatment, or at crucial timepoints, to allow health professionals to troubleshoot adverse events or discuss alternative scar treatment options.
Conclusion
A grounded theory of children and caregivers becoming experts on their own non-invasive burn scar treatments has demonstrated the unique strengths and resourcefulness of these families. This study has presented valuable insights into how children and their caregivers engage with burn scar treatments and provides guidance for health professionals prescribing these treatments, enabling improvements in health-related quality of life for children with burn scars.
Supplemental Material
Supplemental Material - Becoming Experts in Their Own Treatment: Child and Caregiver Engagement With Burn Scar Treatments
Supplemental Material for Becoming Experts in Their Own Treatment: Child and Caregiver Engagement With Burn Scar Treatments by Jessica Killey, Megan Simons, Sarah Prescott, Roy Kimble, and Zephanie Tyack in Qualitative Health Research
Footnotes
Acknowledgments
The authors would like to thank the children and families who participated in this study. Thanks also goes to Joshua Killey who assisted with part of the interview transcription.
Author Contributions
Zephanie Tyack and Megan Simons were joint senior authors on this manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by funding received by the lead author from an Australian Government Research Training Program (RTP) Scholarship and a Queensland Children’s Hospital Foundation top-up scholarship [grant number 50266].
Ethical Approval
Ethical clearance for this study was obtained through the Children’s Health Queensland Human Research Ethics Committee (HREC number: HREC/15/QRCH/249) and the University of Queensland Human Research Ethics Committee (clearance number: 2016000558/HREC/15/QRCH/249). As per local ethics requirements, informed written caregiver consent was obtained for all participants, including all child participants. Verbal assent was also obtained from all child participants (children aged 8 years and older).
Supplemental Material
Supplemental material for this article is available online.
References
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