Background
Childhood fractures are common with around one-third of children suffering at least one fracture before the age of 17 years old [
1]. Childhood fractures have a significant effect on families altering children’s sleep, daily activities, independence and play. Parents can be required to miss work, change their household routines and experience concerns about how the fracture is healing and potential complications [
2].
The wrist is the most common part of the body for children to break. The more serious wrist fractures (displaced distal radius fractures) often look visibly deformed. The children’s radius acute fracture fixation trial (CRAFFT) is a multicentre randomised non-inferiority trial of surgical reduction (surgery) versus casting without surgery (cast) for displaced distal radius fractures [
3]. In the UK, these fractures are typically treated with surgery to realign the bones. The bones are sometimes held in position temporarily by wires (Kirschner wires or K-wires) or plates and screws. K-wires are stiff straight wires that pierce the skin, though protrude through the skin and are usually removed in outpatient clinics. However, surgery may not always be necessary in children as their bones are still growing. The growth of bones enables a process called ‘remodelling’ to occur. Remodelling allows deformity caused by fractures to self-correct as the bone grows.
Evidence regarding parent and children’s experience of orthopaedic injuries and treatment decision-making is limited. After a medial epicondyle fracture, parents’ endeavoured to make a decision about the best treatment for their child and facilitate their child’s recovery but they struggled to accept treatment uncertainty [
4].
Recruiting children to clinical trials is challenging, particularly trials comparing operative vs non-operative treatments [
5]. Parents can be uncomfortable making a decision on behalf of their child. They worry about the consequences of making the wrong decision, self-recrimination, unknown future complications and their child receiving the least effective treatment [
6]. Parents’ moral obligation to be a good parent can exacerbate the challenge of making a decision about trial participation. Children are valued not just for the people that they are but also for the people that they will become [
7]. Parents are therefore not only responsible for their child’s current wellbeing but also their future wellbeing. Parents desire to be a good parent and protect their child and their child’s future self as well as concerns about the appearance of their child’s wrist may influence their decision to participate in CRAFFT.
Building upon the work of Papiez et al. [
4], this study sought to understand families’ experience of a traumatic orthopaedic injury where there may be concerns about the appearance of the wrist. This study explored parents’ experience of their child’s injury, treatment, decision-making and the early phase of recovery.
Methods
The CRAFFT study is registered with the International Standard Randomised Controlled Trials Number Registry (ISRCTN10931294: 27/02/2020). Recruitment is ongoing in 47 NHS sites. As of March 2022, 348 families had consented to CRAFFT. One-hundred-and-sixty-three families declined participation including 43 preferring a cast and 76 preferring surgery.
Sample and recruitment
A purposive sample of parents who were approached about participating in CRAFFT were invited to take part in an interview. The sample aimed to include variation in the children’s age, gender, severity of injury, treatment, the hospital they attended, and decision to take part in CRAFFT. As part of the initial consent process for CRAFFT, families were informed of the qualitative study and asked whether they could be approached about taking part. Parents who were willing to be approached provided electronic consent to be contacted and contact details. Parents were emailed an information sheet about the qualitative study and were contacted by telephone to answer any questions and, if they wanted to take part, arrange a time for the interview. Parents underwent a separate informed consent discussion. Verbal informed consent was recorded and witnessed by an administrator who had undertaken research integrity training referred to as Good Clinical Practice (GCP).
Interviews
The methodology for the interviews drew upon Heideggerian phenomenology and notions of Dasein (being or presence) [
8]. This enabled exploration of participant’s experience of what it is like to be in their lifeworld. It included their personal and social life in the context of temporality, the past, present and future. The researcher acted by focusing their ‘phenomenological gaze’ on the participant and from this interaction developed an understanding of their feelings, thoughts and relationships [
9]. This has proved useful in studies of injury in adults particularly where there is limited evidence of patient experience, as in this study [
10,
11]. Interviews were by telephone up to 3 months post injury and lasted up to an hour. An experienced female qualitative researcher with a PhD, a background in psychology, prior research experience of injury in children and who is a parent conducted the interviews. The researcher did not know the participants prior to the study and one parent chose not to take part when approached. Children who wanted to take part joined their parent. Participants were offered a copy of their transcript, though none took up this offer.
Patient and public involvement (PPI)
Patient and public involvement was undertaken in four main ways; i) a parent and young person PPI group were involved in the design of the study, study information and explainer videos, ii) two in-depth PPI interviews were conducted with parents of children with a displaced distal radial fracture to sensitise the researchers to parent’s experience of this injury, iii) two parents were PPI representatives on the management and steering committee and were involved in all study decisions, iv) one PPI parent is a co-author and worked with the researchers to develop this article.
Interviews explored: i) what injury, treatment and early recovery is like for families, and ii) parents’ experience of being asked to include their child in CRAFFT. Open questions allowed parents to describe their experience in their own words with prompts used to gain insight into how they felt. Children who took part in the interview had the option of talking to the interviewer at the start of their parents’ interview or throughout the interview. Child interview questions included: i) what were you doing when you hurt your wrist? ii) what was it like being in the hospital? iii) how does your wrist feel now?
Analysis
Interviews were audio recorded, transcribed and managed using NVIVO 11 (QRS Warrington). An experienced qualitative researcher led the analysis, using a reflexive approach to thematic analysis. This inductive approach acknowledged the active role of the researcher in interpreting patterns of meaning within the data [
12]. To gain an understanding of each participant’s world, analysis developed through listening to the recordings, reading the transcripts and writing field notes [
9]. Field notes were used to record initial thoughts and important elements of experience. Analysis was iterative, data was coded and new codes added as interviews were undertaken. Similar codes were grouped to form categories and then into themes that identified the structure of experience [
9]. Two experienced qualitative researchers (EP and ET) discussed the data throughout analysis and further reflexive discussions took place with the co-authors of this article.
Rigour and trustworthiness [
13] were achieved through immersion in the world of the participants, reflecting on the developing theoretical framework and the research team’s positionality, the inclusion of extracts of data to illustrate interpretations and descriptions of the participants, context and methods to enable transferability of findings. Data saturation was achieved. The consolidated criteria for reporting qualitative research (COREQ) guidelines informed this article.
Discussion
Our findings show that when confronted with injury and the potential for trial participation, being a good parent and protecting their child underpinned parents’ experience of making the right decision, comforting their child and worrying about recovery. Families sought to make sense of information provided in challenging circumstances and hoped they had made the best decision for their child. The implications for practice are that there needs to be: i) recognition of the high degree of challenge and emotional impact involved in trial participation, ii) support for recovery from fractures to help alleviate the degree of worry, and iii) family centred practices that support parents to nurture their child through treatment and maximise their potential for recovery. In the specific context of the CRAFFT study, decision making in an emergency setting, uncertainty about bone remodelling and worries about ongoing deformity, alongside the lack of knowledge and experience of fracture treatment and recovery, were key sources of concern.
The overarching theme of ‘protecting my injured child’ supports and extends existing research on children with traumatic elbow fractures [
4]. Parents wanted the best for their child, felt responsible for the decision to enrol their child in the trial and felt responsible for their child’s subsequent recovery. They were fearful of making the wrong decision and living with regret, as noted in research in other specialities [
14,
15]. Other randomised controlled trials in paediatrics have identified that parents felt ‘protected’ from feeling responsible for a poor outcome by randomisation [
16], which is a strategy that could be explored within the CRAFFT study.
Decision making in an emergency situation was a challenge for parents, particularly when faced with the fast pace and busy nature of the emergency environment, often where only one parent could accompany the child. Parents were distressed by their child’s injury and were focused on comforting their child. Absorbing information and making decisions within the time constraints was a challenge. Parents who were given the opportunity to consider the study overnight found time helped. Parents who were asked to make a decision quickly felt pressured or wanted a decision to be made and treatment initiated. The optimal time for decision making in the emergency setting is hard to determine. A trial amongst children with appendicitis identified 1–2 hours was the optimal study deliberation time, though noted that parents were apprehensive about treatment delays as a consequence of study participation [
5].
Uncertainty about bone remodelling and worry about deformity exacerbated parents’ concerns about participation in this trial. Parents wanted certainty that their child’s arm would straighten and not be deformed. They trusted surgeons, but also questioned the evidence or sought reassurance about subsequent treatments if the arm were not to straighten. Parents struggled with what they perceived was a severe injury and the stark contrast they faced between surgical and non-surgical treatment. Other studies amongst adults taking part in surgical trials identify participants often struggle to make a decision regarding trial inclusion, which is more marked when the injury is severe or there is a substantial difference between the treatments [
17,
18]. In this study parents believed that surgery would guarantee that their child’s arm would straighten. However, irrespective of whether the wrist was treated with surgery or non-surgical treatment, parents had ongoing worries about the appearance of the wrist, with parents feeling responsible for the cosmesis in both groups. Deformity and the stigma of appearing different can generate strong emotions such as guilt, stress, anger and anxiety in parents of children with a condition or injury as they strive to protect their child [
19]. This can lead parents to pursue surgical treatments to normalise their child’s appearance [
20]. Our study suggests that further research is needed to explore parent’s experience of deformity during recovery from wrist fractures, to understand how families cope over time.
Parents lacked knowledge and experience of a fracture, and often needed help to feel confident in facilitating their child’s treatment and recovery. Communication that parents felt was ‘supportive’ recognised the emotional impact of injury and the challenge of decision making in an emergency setting. It may also help them cope with the anxiety generated by having an unwell or injured child [
21]. Parents nurtured their child towards recovery, but worried about pain, stiffness, appearance, further injury and return to activities. Feeling uncertain is known to contribute to worry and anxiety [
22]. Furthermore, children can observe and mirror their parents’ emotional responses, which may influence the child’s coping strategies. Parents’ emotional response to injury may therefore impact upon children’s experience of surgery and recovery [
23]. Knowing more may help parents to worry less and develop good strategies to support recovery. Advice about what to expect as their child recovers, how their child can use their wrist and when to resume activities could help parents to feel more confident in facilitating recovery. Involving children throughout recovery is also important, as it has been shown that they can feel excluded from discussions about pain, feel their parents often do not know when they are in pain and that pain limits their activities [
24]. Further research is needed to determine the information and support required to increase parents’ confidence to nurture their child during recovery, while engaging and listening to children during this process.
Strengths and limitations
This study included mothers and fathers from across the UK and parents of children who received both study interventions. Only one parent who declined participation in the CRAFFT trial was interviewed, though we recognise that those who decline participation may have different views and experiences to those who participated in the study. Two children joined their parents for the interview. Further interviews with children would give them the opportunity to voice their own experience, rather than relying on their parents’ interpretation. This may aid understanding of what is important to children after injury.
Conclusions
This study reveals the challenges that parents endure to protect their child after injury, which is amplified with the introduction of a research study. We highlight the particular difficulties of undertaking trials in children’s trauma, with the urgency of the condition and the limit on time for contemplation adding a further challenge for parents. However, ‘randomisation’ could be seen as a vehicle to ‘protect’ parents from making the wrong decision, in the face of clinical uncertainty. A parent’s worry for their child is ongoing throughout recovery, despite often feeling they do not know enough. Good communication from clinicians may help parents feel confident by acknowledging their concerns, recognising parents’ struggle to make the right decision, reassuring parents that their child’s wrist will heal and by providing more clarity about what they can expect while their child recovers.
Acknowledgements
We are very grateful to the families who gave up their time to share their experience with us. Thank you to Chris Bouse for transcription and the CRAFFT research collaborators: Marta Campolier, Susan Dutton, Ruth Knight, James Mason, Louise Spoors, Amrita Athwal, Duncan Appelbe, Nicolas Nicolaou, Mark Lyttle, Kuldeep Stohr, David Metcalf, Philippa Burgess, Phoebe Gibson.
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