‘If I knew what was going to happen, it wouldn’t worry me so much’: Children’s, parents’ and health professionals’ perspectives on information for children undergoing a procedure

Abstract

Children undergoing procedures such as blood tests and X-rays experience less anxiety and upset if they are well prepared and informed. Currently the provision of information about procedures can be ad hoc and there are barriers to children understanding this information. This study explored the perspectives of 32 children undergoing procedures (aged between 8 and 12 years), 27 parents and 19 health professionals on the provision of preparatory information to children. Qualitative interviews, prompted by visual images, were thematically analysed. The three themes, ‘accessing information’, ‘understanding information’ and ‘using information’, resonated with the central tenets of health literacy. Children reported mainly accessing information second-hand through their parents and demonstrated misconceptions about their procedure. Children identified that procedural information would help them to know what was going to happen and enable them to feel less worried and scared about their procedure. This study highlights that children can have low levels of health literacy in relation to a planned procedure. Their health literacy in this context is heavily influenced by the adults (parents and health professionals) around them. There needs to be further work conducted, informed directly by children, to improve the health literacy of children attending hospital for planned procedures.

Full text

Article
‘If I knew what was going
to happen, it wouldn’t worry
me so much’: Children’s,
parents’ and health professionals’
perspectives on information
for children undergoing a procedure
Lucy Bray , Victoria Appleton and Ashley Sharpe
Abstract
Children undergoing procedures such as blood tests and X-rays experience less anxiety and upset
if they are well prepared and informed. Currently the provision of information about procedures
can be ad hoc and there are barriers to children understanding this information. This study
explored the perspectives of 32 children undergoing procedures (aged between 8 and 12 years), 27
parents and 19 health professionals on the provision of preparatory information to children.
Qualitative interviews, prompted by visual images, were thematically analysed. The three themes,
‘accessing information’, ‘understanding information’ and ‘using information’, resonated with the
central tenets of health literacy. Children reported mainly accessing information second-hand
through their parents and demonstrated misconceptions about their procedure. Children iden-
tified that procedural information would help them to know what was going to happen and enable
them to feel less worried and scared about their procedure. This study highlights that children can
have low levels of health literacy in relation to a planned procedure. Their health literacy in this
context is heavily influenced by the adults (parents and health professionals) around them. There
needs to be further work conducted, informed directly by children, to improve the health literacy
of children attending hospital for planned procedures.
Keywords
Children, gatekeeper, health literacy, information, preparation, procedures
Faculty of Health, Social Care and Medicine, Edge Hill University, Ormskirk, UK
Corresponding author:
Lucy Bray, Faculty of Health, Social Care and Medicine, Edge Hill University, St Helens Road, Ormskirk L39 4QP, UK.
Email: brayl@edgehill.ac.uk
Journal of Child Health Care
1–13
ªThe Author(s) 2019
Article reuse guidelines:
sagepub.com/journals-permissions
DOI: 10.1177/1367493519870654
journals.sagepub.com/home/chc

Key messages
Children want information about hospital procedures that is child-centred, honest, easily acces-
sible, engaging and understandable.
Parents, acting as gatekeepers, have a key role in facilitating or hindering children’s access to
and understanding of preparatory information.
Children should be provided with the opportunity to discuss preparatory information with par-
ents and health professionals to enable them to individualise and understand information.
Procedural information can enable children to gain realistic expectations of procedures and
help them be less uncertain and worried about what will happen.
Introduction
Most children, sometime during their childhood, will attend health services for a clinical procedure
such as an X-ray, blood test or examination (Lindsey et al., 2014). Children report clinical pro-
cedures as being the worst part of visiting or staying in hospital (Pelander and Leino-Kilpi, 2010)
and they can encounter high levels of anxiety and distress during these procedures (Bray et al.,
2016). Children who are not adequately prepared for health interventions are more likely to have
poor experiences (Sheehan et al., 2015) as well as increased anxiety (Carmichael et al., 2015) and
upset (Coyne et al., 2018; Meiri et al., 2016). These negative encounters can result in children
having a delayed recovery (Kerimoglu et al., 2013), being fearful of healthcare professionals
(Mahoney et al., 2010) and failing to attend follow-up appointments (Shahnavaz et al., 2015).
Research has shown that using resources and information to prepare and educate children for
procedures helps reduce their anxiety (Copanitsanou and Valkeapa¨a¨, 2014) in turn, reducing
children’s negative emotions (Copanitsanou and Valkeapa¨a¨ , 2014) and increasing parents’ satis-
faction with their child’s procedure (Delaney et al., 2015).
There are growing numbers of resource types to prepare children for planned procedures
including leaflets, DVDs, websites and applications. Research evaluating different forms of pre-
paratory information has shown that leaflets are effective in improving children’s knowledge and
reducing their anxiety (Fortier and Kain, 2015) and worries about treatment (Stephens et al., 2013).
Emerging evidence highlights that web-based information (Dai and Livesley, 2018) and play
(Wong et al., 2018) also have a valuable role in preparing children for procedures. Although there
is a huge array of sources of preparatory information for children, a study by Williams and Greene
(2015) found that the field is largely unregulated, quality is variable and resources are not freely
accessible to all, leading to significant gaps in provision. Evidence suggests that children’s
information needs are not always met by current provision (Lambert et al., 2013; Smith and
Callery, 2005), leaving children unprepared and as mentioned previously, more likely to experi-
ence anxiety and uncertainty when interacting with health services.
Many of the information materials and preparatory interventions have been designed by adults
for children. There has been minimal work focusing on how children wish to receive health
information when they are having procedures, what this information should contain and the role of
information on children’s experiences (Gordon et al., 2011; Lambert et al., 2013; Smith and
Callery, 2005). This study sought to understand the key considerations for providing information to
children attending hospital from the perspective of children, their parents and health professionals.
2Journal of Child Health Care XX(X)

The investigation was part of a larger study focused on developing and evaluating an app
(Xploro
®
) for children attending hospital for planned procedures.
Methods
This research used an exploratory qualitative design (Flick, 2008) to examine the perspectives and
opinions of children, parents and health professionals on the provision of information to children
before a planned hospital procedure.
Sampling and recruitment
Children were recruited who were aged between 8 and 12 years and were attending a regional
children’s hospital in the United Kingdom for a planned procedure (X-ray, magnetic resonance
imagery (MRI), computed tomography scan, ultrasound, blood tests, surgery, oncology treatment
and medical investigations). The age of the children recruited was determined by the target
population for the Xploro
®
app. Researchers positioned themselves within the different clinical
departments on different days of the week. Once eligible children had been identified by their
clinical team, the researchers gave the parent and child a study information leaflet, talked through
the study and answered any queries. We did not recruit children with a moderate or severe learning
disability or those under the care of psychological services for procedural anxiety. Seven children
and their parents declined to participate. Health professionals within each department were handed
an information leaflet about the study and were encouraged to contact the research team if they
were willing to take part.
Data collection
A semi-structured qualitative interview prompted by visual images was used to explore the per-
spectives of children, their parents and health professionals on what is important to consider when
providing preparatory information for children attending hospital for procedures. The interview
focused on what information should be included in preparatory information, the format of infor-
mation delivery, challenges to delivering information and how information might influence a
child’s experience of a planned procedure (see Table 1). Many of the children and parents,
unprompted, discussed and reflected on their own experiences of gaining information about a
hospital procedure. Visual images depicting different aspects of a procedure (equipment, health
Table 1. Semi-structured interview questions.
Questions underpinning the semi-structured interview with children, parents and health professionals
What information do you think is useful for children to know about before having a planned procedure
in hospital? (Prompted to look at some visual images of equipment, health professionals, environment
and think about different formats and approaches.)
How would children use information about procedures? (Prompted to think about what might be good/
beneficial about having preparatory information and what might not be good/challenging about this
information.)
Is there anything else we should know about children being provided with information before coming to
hospital?
Bray et al. 3

professionals, environment) were used to prompt discussion and focus the interviews around
particular information content. The use of visual images was in recognition that children partic-
ularly can be helped to participate in interviews by using images and items (Kirk, 2007), although
the images also provided a useful focus for the interviews with parents and health professionals.
Interviews were conducted within a quiet space within the clinical areas. Children and parents were
either interviewed while in each other’s presence or separately depending on the child’s pre-
ference. The interview was either audio-recorded or notes were taken depending on the preference
of the child, parent or health professional involved. Interviews were conducted by all members of
the research team, none of whom had a clinical relationship with the participants.
Data analysis
A six-stage thematic analysis (Braun and Clarke, 2006) approach was used to inductively
identify and code patterns or themes within and across the interview data (Clarke and Braun,
2017). We read and reread the interview transcripts, generated initial codes across the data set
and searched for and identified themes. This initial analysis was conducted independently and
manually by all members of the research team. There was minimal discrepancy between how
we had coded and themed the data. The team then met on several occasions to review, define
and name the themes and thematic mapping (Braun and Clarke, 2006) helped at this stage.
The discussion resulted in some code labels being altered, some codes being collapsed
together and the theme labels being altered. The discussion continued until consensus was
reached (Morse, 2015).
Ethics
This study was awarded ethical approval by the researcher’s institution (FOH194) and the Health
Research Authority (18/SC/0023). All parents and health professionals provided consent to take
part in the study and all children provided verbal or written assent with their parent also providing
consent for their child’s participation. All participants were anonymised within the transcribing of
the interviews.
Findings
Participants included 32 children (18 boys and 16 girls) aged between 8 and 12 years (mean age
10.2) undergoing a range of procedures including blood tests, radiological investigations, medical
and surgical procedures (see Table 2), most of the children (n¼28/32) had undergone a previous
clinical procedure before they attended hospital on this occasion. Twenty-seven parents/guardians
(n¼19 mothers, n¼8 fathers and n¼1 auntie) and 19 health professionals (see Table 3 for job
roles) participated.
The findings will be discussed within three main themes: ‘accessing information: parents as
gatekeepers’, ‘understanding information: misconceptions and skewed understandings’ and ‘using
information: knowing what will happen makes it less scary’. These themes resonate closely with
some of the concepts which underpin health literacy, which refers to a person’s ability to access,
understand, appraise and apply health information to make decisions around their healthcare
(Brown et al., 2007; Lora et al., 2011).
4Journal of Child Health Care XX(X)

Children accessing information: Parents as gatekeepers
Within the ‘accessing information’ theme, children, parents and health professionals all agreed that
there were inadequacies in the way information is currently provided to or accessed by children
attending hospital. Many of the children reported that they had not seen or accessed any infor-
mation before they had come to the hospital for their procedure:
I wish I had known, cos I didn’t get any [information], and it wasn’t as bad as what I thought in my
head. (90A, child aged 9)
Those children who had been in hospital a few times did not recall receiving information or
explanation about their procedure as it had been assumed by parents and health professionals that
they already knew what would happen, but this was not always the case:
I was scared because I forgot because the last time I was in it was a long time ago. (27C, child aged 9)
Table 2. Child participant characteristics.
Child Procedure Total (n¼32)
Radiology 4
MRI 1
CT 2
Ultrasound 1
Medical admission 9
Oncology 5
Haematology 1
Line insertion 2
Physiotherapy 1
Surgical admission 2
Orthopaedic 2
Blood test 10
Plaster removal 7
Note: MRI: magnetic resonance imagery; CT: computed tomography.
Table 3. Job role of health professionals who participated.
Job roles of participating health professional Total (n¼19)
Doctor 1
Nurse specialist 5
Nurse 4
Radiologist 1
Phlebotomist 2
Play specialist 2
Healthcare assistant 3
Student nurse 1
Bray et al. 5

This was despite all the children interviewed stating that they were keen to receive and/or
access honest, clear and realistic information about their procedure. Children identified that
information should be specifically designed for and targeted at children. Information, no
matter what format, should be engaging and accessible, using ‘bright colours’ (61A, child
aged 9) and be ‘fun looking’ (79A, child aged 8). Many of the children commented that they
would not access or look at information if it had ‘toomuchwriting’ (81A, child aged 9),
however, images needed an accompanying verbal or text explanation, ‘it [picture of equip-
ment] could look scary, but if you told me about it then it would not worry me so much’
(P51, child aged 11).
In most cases, children were reliant on their parents for access to information before they
came to hospital. Some of the parents reported not receiving preparatory information or had
been handed a leaflet, which had ended up ‘goinginthebin’ (71A, parent) or had gone
unread:
When we are given leaflets they just go to the bottom of my bag and I forget about them. (88A, parent)
It is not clear why these parents chose not to read the leaflet provided to them. Some parents
did acknowledge that they could find it ‘hard to explain’ certain procedures to their child and
had in the past not known what to tell their child before a procedure: ‘sometimes I don’t know
how to explain things to him or I haven’t got the time’ (P62A, parent). This could result in
parents ‘avoiding talking’ (P27, parent) to their child about the planned procedure and children
not having the opportunity to access information before they arrived at the hospital. Other
parents were keen for more information to share with their child at home, ‘I think being able to
see things before they come in is really useful because it stops children being scared of the
unknown’ (84A parent), and they reported a lack of opportunity to gain information when at the
hospital, ‘at the moment there is minimal interaction with the hospital staff before and during
your visit’ (94L, parent). Many of the parents wanted to check out information before sharing it
with their child, ‘I would like to be there as a filter to check what they are looking at’ (94L,
parent). There seemed to be a degree of mismatch between health professionals identifying the
importance of children having access to information before arrival at hospital, ‘often when we
explain things, children don’t hear what we are saying as they are nervous, for them to have
information, at home is important’ (P9, health professional), and parents either being reluctant
to discuss procedural information or reporting a lack of accessible information to share with
their child.
Parents also acted as gatekeepers to their child accessing information from other sources.
When questioned about the value of the Internet as a source of preparatory information, some
parents and health professionals expressed concern that information might not be ‘relevant to
them’ (PP5, parent) or whether accessing information about invasive procedures would ‘pro-
mote further anxiety’ (HP15, health professional). However, when asked, the children identified
the Internet or apps as a good way to access information about procedures, ‘I can watch it on
YouTube’ (P17, child aged 10) and ‘I would like to use an app to gain information’ (P21, child
aged 11). Most children stated that accessing this information would not increase their anxiety,
‘no I like looking at stuff like that. Why would anyone be scared of it?’ (78, child aged 12), and
having this information would help them not feel in the dark and ‘know more about this stuff’
(child aged 11, 60L).
6Journal of Child Health Care XX(X)

Children’s understanding of information: Misconceptions and missed opportunities
Children’s accounts of preparatory information were laced with misconceptions and a reliance on
second-hand information. Children, parents and health professionals all reported that the use of
medical terminology within written and verbal information could act as a barrier to children
understanding information. Children identified that they did not understand certain terms used
within the hospital, such as ‘who a senior sister’ was, or were confused when terms unfamiliar to
them were used, for example, using the term ‘infusion pump rather than drip’ (52, child aged 12).
Children also reported how misunderstandings could lead to them experiencing anxiety about a
procedure:
Before I had my X-ray I didn’t know what it would look like and I thought it might be a big laser but it
isn’t, you could think it would hurt or something if you thought it was a laser. (child 78A, aged 12)
In many cases where information was gleaned second-hand by children, this could lead to
misconceptions. One health professional recounted how a child due to have a scan had become
upset when they overheard their parents talking about an MRI and had connected this to the
‘diagnosis of an illness rather than having a scan’ (HP15, health professional).
Children, parents and health professionals all reported that visual and engaging information
before a procedure would help children understand what would happen when they attended hos-
pital. Children discussed how a combination of images and text would enable them to understand
and develop realistic expectations of what would happen: ‘it’s better seeing it and knowing what it
looks like than just coming in and thinking it’s a huge needle or something when it’s not’ (84A,
child aged 12). Information was identified as a tool to help adults, health professionals particularly,
‘open up communication with children’ (P15, health professional) and ‘assess children’s under-
standing’ (P15, health professional). However, health professionals need to be aware that some
children and parents identified feeling reluctant to ask questions to clarify their understanding:
‘sometimes you feel stupid asking loads of questions’ (parent 65A) and ‘sometimes you can’t ask
people in here because they’re busy’ (child aged 12, 84A).
Children using information: Knowing what will happen makes it less scary
There was less discussion within the interviews relating to how information could be used to
influence a planned procedure, however, all the children, parents and health professionals
identified that information has an important role to play in reducing children’s uncertainty and
anxiety about procedures. Children suggested that information about what would happen and
how they would feel during a procedure would ‘make [them] feel less worried and less scared in
real life’ (child aged 11, 60L). Preparatory information enabled children to think what the
procedure would be like for them, ‘It’s good to know what the doctor would do first, before you
have it, so you know what it will be like’ (child aged 12, P52) and ‘it’s better to see what it’s like
before you have it because it’s not actually that bad, you just think it is’ (child aged 10, 85A).
Information enabled children to develop realistic expectations of what would happen to them, as
noted previously children could gain an understanding that ‘X-rays are not lasers’andthatit
would not be a ‘huge needle’. These realistic expectations helped children prepare for what was
going to happen and they reported that this would help them feel less worried about their
procedure.
Bray et al. 7

Some parents felt that information before a procedure would help ‘make a visit more patient
centred, more focussed on the child if they know a bit more’ (94L, parent), enabling children to ‘get
involved’ and ‘join in’ more. Health professionals also discussed how information should be the
first step in prompting children to become engaged with health interactions and services: ‘it gives
them the permission that they can talk to health care professionals because sometimes children
think they can’t’ (health professional, HCP15). However, as mentioned previously, some children
and parents may need support to feel able to ask questions and use information to engage or join in
healthcare conversations.
Discussion
This study explored children, their parents and health professional’s perspectives of information
for children attending hospital for a planned health procedure (radiological investigation, blood
test or admission to hospital). The interviews highlighted key considerations in how children can
access, understand and use information relating to a planned procedure; we found the tenets of
health literacy a useful framework against which to consider the key findings (Figure 1). To our
knowledge, this is the first qualitative study to consider children’s health literacy in relation to
hospital procedures. This study demonstrates that children can have low levels of health literacy in
relation to hospital procedures; children encountered barriers to accessing, understanding and
using procedural information, despite reporting that information had an important role in helping
them feel less worried and scared about their procedure. This article also adds insight into how
children’s health literacy is heavily influenced by the adults around them (parents and health
professionals). Current understandings of health literacy acknowledge that an individual’s ability
to access, understand and use health information is influenced by family and organisational sys-
tems (Nutbeam, 2000) and our study supports this, and adds that this influence is particularly
apparent for children (Turner and Dempsey, 2017).
This study has shown that there are complexities and challenges inherent in how children access
and understand information provision before their procedure. Despite all the children identifying
that they wanted honest, clear, jargon-free information, many were disadvantaged by not being
provided with or given the opportunity to access information about their procedure and this led to
them having a lack of understanding of what would happen when they attended hospital. The
interviews from this study highlight the important gatekeeping role parents have in facilitating
their child’s access to information and how unintentionally parents can disempower their child by
limiting access to information and assuming the role of an information filter (Birnie et al., 2014) or
communication broker (Young et al., 2003). In this study, some parents reported being reluctant to
talk to their child about the planned procedure or had concerns that information about an invasive
procedure may increase their child’s anxiety; these concerns reflect previous work with parents
whose child was due to have surgery (Bray et al., 2014; Ching et al., 2015; Smith and Callery,
2005). The timing of information provision is particularly important for school-aged children, who
benefit most from information provided about a week before a procedure, hence enabling them to
havetimetoprocessandunderstandinformationandrehearse coping strategies (Jaaniste et al.,
2007). This means that parents and healthcare organisations have an important role to play in
facilitating children to have access to meaningful information before they attend hospital.
Definitions of children’s health literacy refer to the abilities of children to use the provided
information in an age and developmentally appropriate way (Stalberg et al., 2016: 460), which is
problematic if children are not provided with any information. A lack of child-centred
8Journal of Child Health Care XX(X)

information before a procedure also means that children can be left trying to access and
understand second-hand information while they are in hospital, which can lead to mis-
conceptions. Children’s skewed understandings have been noted in other work where children
have accessed information by proxy (Lambert et al., 2013; Smith and Callery, 2005). In this
way, the context of children’s health literacy is influenced by their dependency on adults to
provide them and support their access to and understanding of health information (Turner and
Dempsey, 2017).
Children accessing
Informaon
Children’s
understanding of
Informaon
Children’s use of
Informaon
Means or opportunity of
obtaining informaon
Ability to comprehend
informaon
Role of informaon in
impacng on
experiences
•Children need informaon
about their planned
procedure before they
arrive at hospital.
•Mulple formats of
informaon are needed –
different children will have
different preferences.
•Informaon must be
engaging and
individualised.
•Informaon should be
provided directly to
children, they should not
have to rely on accessing
informaon second-hand.
•Informaon should be
provided to children no
maer what previous
experiences they have had
of procedures.
•Children’s and parents’
interpretaons and
understandings of the
procedure need to be
explored and discussed in
open communicaon with
professionals.
•Children and parents must
be provided with the
opportunity to ask quesons
about procedures and
treatments.
•Children understand
informaon beer if it is
free from medical
terminology and is
presented using text and
images.
•The provision of
informaon can help
children make choices and
decisions about what
happens during their
procedure. Health
professionals need to
facilitate this process.
•If children are informed
about their procedure and
can develop realisc
expectaons they
experience less anxiety and
uncertainty.
•The provision of
informaon can help
children develop their own
coping strategies to use
during a procedure.
Figure 1. Key concepts of health literacy applied to children’s preparation for planned procedures.
Bray et al. 9

A lack of information and understanding can result in children being disadvantaged by them not
having the opportunity to use information to join in or gain agency during a procedure. It is worth
noting here that children and parents can feel reluctant to join in conversations and ask questions
when in hospital, hence again highlighting the importance of pre-procedural information. The role
of information in enabling and empowering children was only minimally referred to by parti-
cipants in this study although many children commented that they would use information to help
them feel ‘less scared’, ‘less worried’ and ‘more in control’ of the situation. This supports
evidence which shows that information, understanding and involvement can help children
experience less anxiety (Coyne et al., 2018; Fregene et al., 2017) and have better experiences of
their time with health professionals and services (Sørensen et al., 2012). As Chinn (2011)
suggests there is a link between health literacy and empowerment, whereas if children under-
stand and can develop realistic expectations aboutwhatwillhappenwhentheycometohospital,
they can become more active in healthcare encounters and more engaged in making choices.
Although to date there has been more research focused on the improvement of adults’ health
literacy (Batterham et al., 2016; Brijnath et al., 2016; Guzys et al., 2015; Jacobs et al., 2016), this
study supports previous calls (Turner and Dempsey, 2017) for a need for further investment in
improving children’s health literacy through initiatives directed at children (Australian Bureau
of Statistics, 2008; Batterham et al., 2016). This article highlights that any health literacy ini-
tiative needs to be directly informed by children’s perceptions, while acknowledging that in
order to enact a broader systems change (Parker and Ratzan, 2010), parents, healthcare pro-
fessionals and organisations need to be brought on board.
Limitations to the study
The interviews were conducted when families were attending hospital with their child for a
planned procedure within a busy hospital department. We were cognisant of being sensitive
when approaching children and parents to take part and conducting the interviews, when they
may be rushed or stressed; this may have influenced the data we collected. Some child parti-
cipants were interviewed with their parents present which may have influenced their responses.
Although the sample population included different ages, genders and ethnicities, the study was
only conducted in one hospital trust. This study only focused on the procedural health literacy of
8- to 12-year-old children, younger children and young people aged over 13 years may have
different health literacy needs.
Conclusion
Children in this study encountered barriers to accessing, understanding and using procedural
information; this impacted on their level of health literacy. We found that despite children wanting
information before they come to hospital for a planned procedure, they are often not provided with
or supported to access information. The lack of honest, clear and accessible information resulted in
children having low levels of understanding and limited opportunities to develop realistic
expectations of what would happen during a procedure. This in turn limited their ability to develop
their own coping strategies to use before, during and after a procedure takes place. Parents, acting
as gatekeepers, had a key role in facilitating or hindering children’s access to and understanding of
preparatory information. There needs to be further work conducted, informed directly by children,
to improve the health literacy of children attending hospital for planned procedures.
10 Journal of Child Health Care XX(X)

Acknowledgements
The authors thank all the children, parents and health professionals who took part in the study.
Findings from the study have informed the development of Xploro
®
, a patient information app
developed by Corporation Pop, the lead partner in the project.
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 study was funded through an Innovate UK grant as part of a
wider project.
ORCID iD
Lucy Bray https://orcid.org/0000-0001-8414-3233
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