It takes a village to raise a child- A multidisciplinary approach to promoting paediatric health literacy in cystic fibrosis

Abstract

Background

In Northern Ireland, approximately 550 people with cystic fibrosis (PwCF) attend the regional paediatric and adult centres within the Belfast Health and Social Care Trust. This autosomal recessive chronic condition necessitates regular clinical monitoring and a high treatment burden, as well as time implications for the maintenance of respiratory devices. Development of health literacy skills at an early age and promoting children with CF (CwCF) to take an active role in their healthcare has many advantages relating to their long-term self-care in preparation for transition from paediatric to adult care, decision-making and partnership engagement with the CF-multidisciplinary team (CF-MDT).

Methods

This study comprised of four individual components, namely (i) an analysis of responses (n=24) to an anonymous questionnaire from the Northern Ireland CF community to determine where PwCF and their carers/families seek healthcare information; (ii) to co-produce paediatric-facing healthcare educational resources, namely colouring/ storybooks and animations, relating to the importance of microbiological sampling, nebuliser hygiene and pancreatic replacement therapy (PERT) in conjunction with the CF-MDT, CwCF, parents, students and animators and (iii) assess the readability of these new materials using Flesch Reading Ease (FRE), Flesch-Kincaid Grade Level (FKGL), SMOG Index and Gunning Fog (GF) Index and compare these with paediatric and adult-facing materials available from CF charities, pharmaceutical companies and the scientific literature. The final component (iv) examined parents’ and children’s knowledge of PERT pre- and post-viewing the bespoke animation.

Results

(i) The findings showed that the CF community relied upon the CF-MDT as their primary source of healthcare information, most frequently consulting the Doctor/CF Consultant (61.5%), the physiotherapist (61.6%), the nurse (57.7%), followed by the CF dietitian (34.6%), as well as the Cystic Fibrosis Trust (38.4%). Pharmaceutical websites were least consulted with 69.2% of respondents never consulting such resources.

(ii) Reflective learning points from this co-production of resources are provided to assist other healthcare teams preparing engaging and effective healthcare information for the paediatric service user.

(iii) The readability of the new paediatric-facing materials prepared by the CF-MDT was appropriate for primary school aged-children and was not statistically different from paediatric-facing information prepared by charities or pharmaceutical companies. A statistical difference was noted in relation to the prepared materials in comparison with adult-facing charity information (p=0.04; 0.02; 0.03; 0.04) and scientific abstracts (p<0.0001), which were more complex in terms of readability parameters, FRE, FKGL, SMOG and GF, respectively.

(iv) Following viewing the PERT animation, both parents’ and children’s knowledge had improved with 50% of children’s understanding determined as moderate/little understanding (pre-animation) and 50% very good/ 42 % good (post-animation).

Conclusions

Healthcare professionals are important custodians of healthcare information for their service user population. Paediatric healthcare teams have a responsibility to aid in the development of health literacy skills at an early age and promoting children to take an active role in their healthcare. The use of colouring/storybooks and animations are excellent media to initiate discussions and develop partnerships in paediatric healthcare in an engaging and informative manner. Whilst this study related to CwCF, the findings may be applicable to the health literacy of children of other disease states. For optimum impact, the healthcare team should (i) co-produce these media with the paediatric service user, their families and animation teams and (ii) ensure that the readability, legibility and formats are appropriate, informative and engaging for the target age-group.

Introduction

Cystic fibrosis (CF) is an autosomal recessive condition caused by mutations in the cystic fibrosis transmembrane regulator (CFTR) gene which codes for a protein whose function is to transport chloride and bicarbonate ions across the apical surface of epithelial cells¹. Mutations in this gene results in an imbalance of ions and surface ion transport causing a build-up of sticky mucus in various organs, particularly the lungs. The resulting impaired mucociliary clearance in the lungs promotes chronic inflammation and infection which ultimately causes damage to the CF lungs¹. Other organs are also affected which necessitates the condition to be managed by means of a multidisciplinary Team (MDT) approach primarily relating to the treatment and management of (i) ensuring optimal oxygen saturation and respiration, (ii) lung infections, (iii) pancreatic insufficiency; (iv) gut complications, (v) nutritional support, (vi) CF-related diabetes (CFRD), (vii) therapeutic treatment plans involving medications, (viii) airway clearance, (ix) lung transplantation, (x) infection prevention and control, as well as other related clinical needs e.g., gynaecology, obstetrics, genetic counselling² (Figure 1). The resulting high treatment burden comprising of oral, intravenous and nebulised medications, respiratory physiotherapy regimes and exercise coupled, with review appointments, in-patient stays and the requirement for a plethora of samples to be taken and tests to be performed, all of contribute to patient anxiety, as well as impacting on compliance and adherence.

Figure 1:

The structure of the core cystic fibrosis multidisciplinary team and other associated specialisms

Health literacy is an important aspect of the management of cystic fibrosis and the role of effective communication and healthcare educational approaches used by the MDTto support individuals with CF and their families plays a fundamental role in alleviating anxieties and empowering individuals to take an active role in their healthcare management³. Health literacy has various definitions⁴, however a recent systematic review by Liu et al. (2020) defines health literacy as the ‘ability of an individual to obtain and translate knowledge and information in order to maintain and improve health in a way that is appropriate to the individual and system contexts’⁵. These authors also defined three broad themes relating to health literacy in relation to “(1) knowledge of health, healthcare and health systems; (2) processing and using information in various formats in relation to health and healthcare; and (3) ability to maintain health through self-management and working in partnerships with health providers”⁵.

It has been reported that persons with cystic fibrosis (PwCF) have higher health literacy scores than those of the general public⁶, which has been suggested to be due to the frequent interaction between PwCF and the multidisciplinary members of the CF team. Healthcare teams should also be mindful, however, that in the case of PwCF, that the level of health literacy does not directly correlate with educational attainment. It has been reported that, in the case of adolescents and young adult PwCF, higher health literacy capabilities are associated with better health outcomes, lower cost implications and a higher quality of life (QoL)⁶. This has been highlighted by the fact that PwCF with limited health literacy capabilities have been shown to have a trend of lower lung function/ppFEV1, higher chronic colonisation with Pseudomonas aeruginosa, more frequent outpatient visits and in-patient stays and greater use of intravenous antibiotics, as well as number and duration of oral antibiotics⁶.

Recently, Mindel (2023), reported that children with cystic fibrosis (CwCF), in the age range 8-13 years, who had a “mature understanding and awareness of their condition” wanted to participate in their medical care, as they understood the requirement of such care, however they trusted that the medical team would make most of the medical decisions⁷. This study highlighted many facts which were important to children, namely with respect to developing their knowledge, understanding, particularly in relation to the reasoning and practicalities of treatments and procedures. By incurring such inclusivity when providing clinical care for CwCF, this would potentially help to alleviate anxiety associated with a lack of understanding, particularly relating to such treatments and procedures, as well as encouraging shared decision making (SDM)^7,8. Of note, a Cochrane intervention review relating to the promotion of decision making for the target population of CwCF (aged 4-18) reported that due to the absence of eligible randomised control trials (RCTs), there was a lack of evidence-based findings and hence a need for such trials, as well as the important need to train healthcare professionals and develop models to ensure that CwCF are involved in SDM in a manner that is suitable for their age group⁸.

Development of health literacy skills at an early age and promoting children to take an active role in their healthcare has many advantages relating to their long-term self-care in preparation for transition from paediatric to adult care, decision-making and partnership engagement with the healthcare team⁸. The formation and foundations of health literacy is believed to begin in childhood and this is particularly true for children with chronic illnesses⁹. Most healthcare materials in general and for the CF community, target the adult patients or the parent/carers of paediatric individuals and as such, there is a paucity of studies relating to healthcare information for the paediatric audience per se.

As such, the goals of the Belfast CF-MDT were to help CwCF to develop their health literacy skills by informing children along with their families of best evidence-based practices relating to their care. These initiatives included the development of bespoke health education story/colouring books and animations, by means of a co-production approach, involving the CF-MDT, CwCF and their families, as well as students from Queen’s University Belfast and Ulster University. These materials targeted (i) why it is important to provide a good respiratory specimen, what happens to it when it goes to the laboratory and what does it mean for the CwCF; (ii) why and how to clean the respiratory nebuliser and (iii) the importance of pancreatic enzyme replacement therapy (PERT). From the reflections of preparing these paediatric facing materials practical guidance is provided for other healthcare teams wishing to use a similar communicative co-production approach to the paediatric community in relation to the format and readability of such materials.

Methods

Information sources questionnaire

As part of a service development, quality improvement initiative, voluntary, anonymous questionnaires were completed at outpatient clinics and hospital in-stays, by the Adult and Paediatric CF community in Northern Ireland, to assess the sources of CF-healthcare information consulted. These Likert styled questions asked:-

“How often (Always, Frequently, Sometimes, Seldom, Never) do you

1. Ask the following members of your CF Clinical Team in order to obtain information relating to Cystic Fibrosis?” (CF/Doctor/MD/Consultant; GP/Family Physician; CF Nurse, CF Physiotherapist, CF Dietitian, CF Social Worker, Community Pharmacist, Hospital Pharmacist, Clinical Psychologist)?

2. Consult medical/scientific journals to obtain information relating to cystic fibrosis?

3. Retrieve information from the Cystic Fibrosis Trust (UK) website?

4. Consult pharmaceutical websites for information relating to Cystic Fibrosis?

Animations & Story/colouring books

A needs analysis was determined through discussions with the cystic fibrosis multidisciplinary team, which highlighted three priority areas of focus to educate and promote/engage CwCF in their own healthcare responsibilities. Firstly, due to increasing difficulties in obtaining a quality respiratory specimen from children with CF and the future impact on sputum production due to the use of CFTR medicines, there was a need to emphasise to children and their parents the importance of obtaining a respiratory specimen for microbiological analysis. Secondly, our group had recently published peer-reviewed recommendations on how to clean and disinfect nebulisers¹⁰. Resources were required to promote such best practice relating to nebuliser hygiene and to instil ownership of such practice at an early age. Thirdly, pancreatic enzyme replacement therapy (PERT) is a vital part of treatment in people with cystic fibrosis (PwCF) who are pancreatic insufficient. Symptoms of fat malabsorption, ineffective dosing or poor adherence to PERT, and subsequent poor nutritional outcomes are well documented¹¹. The dietetics team wished to educate and re-enforce the importance of adherence to PERT to CwCF as well as their families.

The preparation of animation videos was conducted in stages similar to another study¹². Stage 1: CF-MDT identified a “needs analysis” of topics which needed promotion and awareness to encourage active participation of CwCF. Stage 2: Script design prepared by the CF-MDT. Stage 3: Storyboards drafted based on the scripts and discussions between the CF-MDT team and animators. Stage 4: Digital media design, where scenes, backgrounds and characters for the educational materials were prepared using Adobe Photoshop¹². Stage 5: Animation of characters and objects followed by compositing using Adobe After Effects. Stage 6: Rendering of completed animation for mp4 file production, prior to embedding as YouTube videos for circulation. Three animation videos and accompanying story/ colouring books were prepared.

Video 1 was entitled “Journey of the Sputum Pot” which lasted 2min 06s (https://youtu.be/c6_UvffZE1c?si=QD9SXpTFFR37YgVm). Figure 3 details excerpts from the accompanying book. This video follows Zara, a CwCF, who initially explains what CF is and its impact in relation to coughing. Zara explains the role of the healthcare team and the fact that Jane, the physiotherapist, helps Zara get clear sputum which is sent to the laboratory. Zara wishes to know what happens the sputum or cough swab when it goes to the laboratory. John, the microbiologist explains why it is important to look at Zara’s respiratory samples and what it means for Zara, in terms of selecting the most appropriate antibiotic. The script of this video was written by Clinical Scientist in Clinical Microbiology, BC Millar; healthcare advice was provided by physiotherapists L Alexander and J Bell; animation was prepared by animation students, K Catney and D Toland (supervisors A Parkin & B Coyle) and voices provided by Zara and JE Moore, Clinical Microbiologist.

Figure 3:

Excerpts from the colouring/storybook entitled “The Journey of the Sputum Pot”

Video 2: Was entitled “How to clean and disinfect the nebuliser in cystic fibrosis”, the core content lasted 2m 14 s (https://youtu.be/Pw_w9ZXrHsw?si=lB7bAES4fYUHIbEg). Figure 4 details excerpts from the accompanying book. In this video Zara, a CwCF, explains the role nebulisers play in CF therapy. Zara asks Jane, the physiotherapist, why is it necessary to wash the nebuliser after it is used, particularly when it is going to be used again. Jane, explains why and demonstrates the correct cleaning and disinfection procedure. This video was written by L Alexander and J Bell; facilitation and healthcare advice was provided by BC Millar and JE Moore; animation was prepared by K Catney and D Toland and voices provided by Zara and J Bell.

Figure 4:

Excerpts from the colouring/storybook entitled “Washing the nebuliser”

Video 3: Was entitled “Food and Enzymes-How it all Works” (The importance of enzymes in cystic fibrosis) (https://youtu.be/Oyva3Y5PjsQ?si=GYGEZotjt-V19mV1) the core content lasted 2m 46s. Figure 5 details excerpts from the accompanying book. In this video Henry, a CwCF, wants to find out why it is important to take capsules or enzymes when eating. Henry’s mum takes him to visit Christine, the dietitian, who explains Pancreatic Enzyme Replacement Therapy (PERT), its role, action, potential side effects if missed and members of the CF team who have knowledge of PERT. This video was written by dietitians C McCabe, W Wright and E Grieve, facilitation healthcare advice was provided by BC Millar and JE Moore; animation was prepared by K Catney and D Toland and voices provided by Henry, Henry’s Mum and dietitian C McCabe.

Figure 5:

Excerpts from the colouring/storybook entitled “Food and Enzymes-How it all Works!”

Analysis of Readability of written materials

The readability of the BHSCT materials (n=3) and materials prepared for CwCF from reputable sources namely CF charities (n=8) and pharmaceutical companies (n=7) were analysed and compared with the readability of adult facing PwCF information provided by CF charities (n=10) and scientific abstracts relating to CF (n=10). The subscription software package, Readable (www.readable.com) was used to perform the analyses and was chosen as it is reliable, easy-to-use and widely available¹³. Readability measures included readability grade levels according to the Flesch-Kincaid Grade Level (FKGL), Gunning Fog Index and SMOG Index and readability score according to the Flesch Reading Ease (FRE), as detailed in Table 1. Text statistics and text density were also assessed. These readability measures were chosen as they have been used widely and accepted by scientific and non-scientific communities alike^14-17.

Table 1:

Readability formulae used in this study and their associated target score for the general public

Readability Scores	Readability formula	Target score for texts aiming at the general public
Flesch-Kincaid Grade Level (FKGL)	0.39 (total words/total sentences) + 11.8 (total syllables/total words) − 15.59	A text aimed at the general audience should have a grade level of 8 or lower. At Grade Level 8, 85% of the general population will be able to read and comprehend the text.
Flesch Reading Ease (FRE)	206.835 − 1.015 (total words / total sentences) − 84.6 (total syllables / total words)	A target score of 60 or above.
Gunning Fog Index	0.4 [(total words / total sentences) + 100 (complex words / total words)]	Grade level of 8 or below.
Simple Measure of Gobbledygook (SMOG) Index	3 + square root √polysyllabic count in 30 sentences	Grade level of 8 or below.

Readability formulae are taken from Readable.com

Note: 4–6th grade = British school age equivalent of 9–12 years; 7–9th grade = British school age equivalent of 12–15 years; 10–12th grade = British school age equivalent of 15–17 years; >12th grade = British school age equivalent of 17 years and over¹⁴.

Evaluation of parent and children’s knowledge of pancreatic enzymes pre- and post-viewing animation video

As part of a service development, quality improvement initiative, two voluntary, anonymous questionnaires, employing a 5 point Likert scale were hosted on the Northern Ireland Paediatric Cystic Fibrosis Centre closed-group Facebook page. The pre-questionnaire was released two weeks prior to the launch of animation video 3 and the post-questionnaire, following the release of the video, to assess the perceived knowledge of parents and their perception of their child’s knowledge of PERT.

Statistics

Statistical analyses were performed on readability and text metrics of paediatric and adult information from all five sources detailed above. For data relating to readability scores (FRE, FKGL, Gunning Fog Index and SMOG Index), a Shapiro-Wilk test for normality was performed followed by a one-way ANOVA with a Tukey’s multiple comparisons test between all information sources. For data relating to text metrics, following a Shapiro-Wilk test for normality, normally distributed data relating to words per sentence was analysed by a one-way ANOVA with a Tukey’s multiple comparisons test. For analysis of syllables per word which was not normally distributed, a Kruskal-Wallis test and post hoc by Dunn’s multiple comparisons test was performed. Statistical significance was set at p≤0.05. All analyses were conducted using GraphPad Prism 10 for Windows, Version 10.0.0 (GraphPad Software, Boston, USA).

Results

Information sources questionnaire

Twenty-seven questionnaires were completed by the local CF community, in relation to the frequency of asking members of the CF clinical team, the community general practitioner, the community pharmacist or consulting information provided by the charity, the CF Trust, scientific journals or pharmaceutical websites, in relation to cystic fibrosis. The most frequently contacted individuals for such information were members of the CF multidisciplinary team namely the Doctor/CF Consultant, the nurse and the physiotherapist and dietician, as well as the Cystic Fibrosis Trust (Figure 2). Pharmaceutical websites were least consulted with 69.2% of respondents never consulting such resources (Figure 2).

Figure 2:

Results of a questionnaire detailing where members of the cystic fibrosis (CF) community in Northern Ireland (n=27), source healthcare information on CF.

Animations and Story/colouring Books

Animations and story/colouring books (Figures 3-5) were prepared adhering to the criteria detailed in Figure 6.

Figure 6:

Key points to consider when preparing engaging and effective healthcare information for the paediatric service user.

Analysis of Readability of Written Materials

Readability scores and text densities, namely words per sentence and syllables per word for the paediatric-facing and adult-facing materials, relating to cystic fibrosis, are shown in Figures 7 & 8, respectively. In relation to FRE, FKLG, Gunning Fog Index and SMOG Index (Figure 7 A-D) and text metrics (Figure 8 A & B), there was no statistical difference between the three paediatric-facing material sources i.e., those prepared by the charities, pharmaceutical companies and the authors. Statistical significance was noted in comparison of the paediatric sources with the adult-facing charity and scientific abstract resources in relation to readability scores (Figure 7 A-D), with adult-facing materials and scientific abstracts not meeting the target readability levels, for the adult population. In relation to the text metrics, it was noted that there were statistically significant differences, namely that paediatric-facing information contained less words per sentence and less syllables per word, which would contribute to their enhanced readability (Figure 8 A & B).

Figure 7:

Box-and-whisker plots comparing readability scores calculated from analysis of paediatric-facing healthcare information relating to cystic fibrosis prepared by cystic fibrosis charities (n=8); pharmaceutical companies (n=7); the authors’ materials (n=3) and adult-facing materials (n=10) prepared by charities and scientists in the form of scientific abstracts (n=10). (A) FRE; (B) FKGL; (C) Gunning Fog Index; and (D) SMOG Index. Boxes represent IQRs (25th to 75th percentiles) and bars represent the medians. Whiskers represent the 10th and 90th percentiles and coloured dots represent outliers outside these percentile ranges. Statistical significance is shown where a p value of <0.05 (5%) was considered as statistically significant. The dashed red lines represent the target readability score for the general population. For the FRE, this is ≥60 and for the FKGL, Gunning Fog Index and SMOG Index this is ≤8 for the general population (i.e., approximately secondary school students).

Figure 8:

Box-and-whisker plots comparing text metric scores calculated from analysis of paediatric-facing healthcare information relating to cystic fibrosis prepared by cystic fibrosis charities (n=8); pharmaceutical companies (n=7); the authors’ materials (n=3) and adult-facing materials (n=10) prepared by charities and scientists in the form of scientific abstracts (n=10). (A) words per sentence and (B) syllables per word. Boxes represent IQRs (25th to 75th percentiles) and bars represent the median. Whiskers represent the 10th and 90th percentiles and coloured dots represent outliers outside these percentile ranges. Statistical significance is shown where a p value of <0.05 (5%) was considered as statistically significant.

Evaluation of parent and children’s knowledge of pancreatic enzymes pre- and post-viewing animation video

Parent respondents (n=18) to the pre-video questionnaire ranked their level of understanding of how PERT works as very good (55.6%), good (33.3%) and moderate (11.1%). When rating their children’s understanding, 50% felt they had either a very good/good understanding, whilst the remaining 50% felt they had either moderate, little or no understanding. Parent respondents (n=14) to the post-video questionnaire showed that 12 (85.7%) had watched the video with their child and those who did not were a parent of a baby and the parent of a child who was pancreatic sufficient, so they did not feel it appropriate to watch. Parents ranked their level of understanding of how PERT works as very good (86%) after watching the video, and the remaining 14% had good understanding. All children (n=12) who watched the video, had either very good (58%) or good (42%) understanding of how PERT works. Comments included: “As we learn about how enzymes will be part of our lives, this is brilliant for us to share with family who are also new to it”; “Very informative and a great tool…sometimes we get caught up in just doing it and forget why”; “Easy to understand and designed in a brilliant way to help a child understand easily”.

Discussion

The United Nations Convention of the Rights of the Child (UNCRC), which defines a child as anyone under eighteen years of age¹⁸, came into force in the UK in 1992¹⁹. The UNCRC has 54 articles which relate to all aspects of a child’s life and each of these articles relate to each other^18,19. Article 12, which relates to respect for the views of the child, has been noted as of particular significance in relation to healthcare practice and medical decisions^18,20. Healthcare professionals generally recognise the importance and requirement to involve children in various healthcare-related decisions and practices²⁰, primarily by providing explanations of treatments and procedures. Recently, however, Davies and colleagues (2023) discussed significant barriers to the real-world implementation of this Article 12 and stated that healthcare providers need to actively implement Article 12, rather than provide token gestures to listening to children’s views²¹. These authors acknowledged that this may be difficult due to a lack of clear guidelines for medical practice. A recent National Institute for Health and Care Excellence (NICE) guideline²² entitled “Babies, children and young people’s experience of healthcare”, may in part, provide such a guideline, relating to the importance of ensuring children and young people are listened to and provided with information to enhance their understanding of their condition. Additionally, this would allow children to be involved in decisions regarding their healthcare if they have the competence to do so. Such practices can promote positive experiences for the child which in turn can build trust relationships with healthcare professionals, alleviate anxiousness and distress, particularly before procedures and interventions, promote self-confidence and empower children to manage decisions regarding their own healthcare. It is also important to recognise that children are not defined by their health condition but that they have a life outside of the healthcare setting where they participate in common activities along with other children²². This NICE guideline also states that the methods of communication, information and discussions are tailored for the child’s age, developmental stage and level of understanding²².

Important considerations when preparing paediatric-facing materials

When preparing and communicating information for the paediatric community, the team considered several aspects of the content and delivery of the healthcare advice as detailed below and summarised in Figure 6, which other healthcare teams may find useful when preparing such materials.

Encouragement to ask questions

All three videos initially commenced with a CwCF asking a healthcare professional a question who in turn provided the CwCF with the evidence-based information required. This highlighted who was the most appropriate member of the healthcare team from which to seek guidance and also provided an opportunity to convey the friendly and approachable nature of team members. The rationale for such inclusion was to convey the message that the healthcare team welcomes and encourages CwCF to ask questions.

Building partnerships and trust

Videos alluded to the role that family members had in the day-to-day management of their healthcare and the importance of coming for regular reviews with the healthcare team, thereby highlighting that the management of their condition is a shared responsibility between child, healthcare team and parents/carers all working in partnership for the wellbeing of the child. The animated videos and story/colouring books were chosen as they provided healthcare team members an opportunity to establish discussions regarding treatments and practices and provided children the opportunity to discuss and share their experiences with family and careers in their home environment outside of the clinical setting. It is important to allow children, along with their careers and families, to absorb such information at their own pace and in their own environment and then subsequently the healthcare team can re-address the healthcare messages which they are attempting to address²².

Promoting identity and confidence

The NICE guidelines, as detailed above, promote that the preparation of digital healthcare information is conducted in partnership with children and young people²². In this case, CwCF were the primary role players in the animations prepared by our team and the children’s families also participated by discussing the scripts and playing themselves in the final animation in the case of the “Enzymes” video. This was important so that other CwCF could identify with the scenarios portrayed.

Delivery to promote engagement and cognition

The ability to communicate with service users who have different levels of understanding and disability issues by using a variety of communication modalities both verbal, digital and non-digital is a competency which has been recently recognised in the revised standards of proficiency for allied healthcare professionals²³. Additionally, in the General Medical Council Professional Standards for Doctors, Good Medical Practice emphasises the importance of communication and sharing evidenced-based information with patients in a manner appropriate to their communication needs so that as to support them to “engage in meaningful dialogue and make informed decisions about their care”²⁴. In this case, the videos provided an aural and visual presentation of key information and accompanying bespoke subtitles and were used to ensure that members of our CF community who had hearing difficulties were provided with this information in an accessible and accurate format as autogenerated subtitles may provide inaccurate wording.

When preparing materials for children it is important to be mindful that children have different cognitive abilities and not all have reached the same level of reading. The team therefore decided to prepare two forms of media, namely animations and colouring/ storybooks. Scripts were written in a simple syntactic style to aid understanding.

Children are primarily influenced by their experiences, particularly in relation to what they feel and see²⁵. As such, it is important to use imagery both which is attractive and objects and people with which the children are familiar with. In the preparation of these materials, complementary colours for background elements were used as to not cause distraction and contrasting colours were used for characters to allow them to stand out. Attention to detail was made in relation to the healthcare setting so that the CwCF could identify the out-patient clinic which they attended, with imagery of a monkey, lion and tree in the animation similar to that the art detail on the walls of the clinic. Children could also recognise specific pieces of respiratory equipment, sample collection swabs, containers and medications which all are encountered routinely within the healthcare activities.

Animations have been used to deliver healthcare related educational materials on a range of topics^26-28. One such example was a study which examined an animated educational video prepared for children aged between 5-11 years, undergoing a MRI without sedation, which successfully improved children’s knowledge of the procedure, reduced children’s anxiety, retained attention and was described as enjoyable²⁶. Animations provide the opportunity to deliver information in a fun and engaging manner which is believed to stimulate children’s imagination and enhance learning outcomes²⁵. The animated characters namely, the healthcare professionals were modelled on the real-life people i.e., the dietitians, the physiotherapist and the microbiologist, as well as the CwCF and their family members. The voice-overs for the animations were provided by the healthcare team, CwCF and a mother of one of the CwCF, which again provided a familiar environment for the CwCF. To further promote engagement with the materials, anthropomorphism was used in relation to antibiotics, mucus, enzymes and bacteria. The animation of characters and animation movement and anthropomorphism significantly impacts the viewer’s visual attention and cognition^29,30.

In relation to the story books, attention was given to the font style used, namely Arial at a large size of 24, to aid with letter and word identification³¹. It is important to consider typography in relation to children of different ages, reading abilities and reading difficulties such as dyslexia, in relation to font style, size, spacing between words, letter and lines, weight of typeface and the use of uppercase letters, as these parameters can influence motivation and legibility of text^31-33. Story/colouring books have been previously used to deliver healthcare guidance in relation to asthma to children and have been shown to provide opportunities for discussions between children and the healthcare team, as well as opportunities for the children to share such information with family members³⁴.

Reliability of healthcare information

It was of interest and encouraging to note that the local CF community most frequently consulted the healthcare team, primarily, the CF consultant/doctor, nurse and physiotherapist for healthcare information, followed by the UK CF charity, Cystic Fibrosis Trust. It is important that healthcare information is provided by a reliable professional or charity evidence-based source²². It is also of interest to note, that although pharmaceutical websites contain a reliable source of information, that in the case of the local CF community who completed the questionnaire, the majority never consulted such websites (69.2%), potentially reflecting that many such websites are for healthcare professionals only and restricted to certain global areas³⁵. Furthermore, online materials which are children-facing in relation to cystic fibrosis, is limited or difficult to find (for some key resources see Table 2). As such, these points further enforce the responsibility of the healthcare team to provide such children-facing resources.

Table 2:

Health literacy resources for children with cystic fibrosis

CF Trust

Seb’s Best Game (my Daddy has CF) The Lost Collar Investigation (my Mummy has CF) The A to Z of cystic fibrosis-What is cystic fibrosis? CF-What’s it all about? A film for children Getting Nosey about CF with Oli and Nush Cystic Fibrosis Western Australia CF Smart Good Clean Hands Foundation Care Huxi meets her super team Huxi goes on vacation! The amazing story of Huxi a panda with cystic fibrosis San Diego Chapter, CFF CureFinders SD Chapter CFF What is cystic fibrosis? Boomer Esiason Foundation Big Air Jerry Big Air Jerry: Exercises with Cystic Fibrosis Big Air Jerry: Does his Daily Cystic Fibrosis Treatments Big Air Jerry: and Teamwork Big Air Jerry: Learns to Stay Positive Big Air Jerry: Episode 6: Compliance– Organize Your Pills Big Air Jerry: Episode 7: Nutrition and Snacks Big Air Jerry: Episode 8: Compliance – Nebulizer Medications Big Air Jerry: Episode 9: Traveling with Cystic Fibrosis Big Air Jerry: Stays Hydrated Big Air Jerry: Compliant with Cystic Fibrosis Jumo Health Understanding Cystic Fibrosis Genentech Who am I? Chiesi The 7 steps to staying well with CF Vertex Pharmaceuticals Inc. Eugene’s Big Book of CF Words Causes and Impact of CF Progression in the Lungs Impact on the Digestive System Impact on Bones, Kidneys, and Hearing Visiting the CF Care Center Meeting the CF Care Team PARI Meet Mo, the Pesky P.A. Bug! BBC Teach Living with cystic fibrosis-I can’t go to school Jasper’s Story Living with Cystic Fibrosis Royal Brompton and Harefield Hospitals, UK Transition Animation film 1 Transition Animation film 2 Belfast Health and Social Care Trust (Authors) Journey of the Sputum Pot Cleaning the Nebuliser Food and Enzymes: How it all works!

Storybook https://www.cysticfibrosis.org.uk/the-work-we-do/information-resources/resources-for-children-and-young-people/rosie-and-seb Cartoon animation https://youtu.be/UJxHbcHciPg?si=mu42TeSPp3pD9AW3 Storybook https://www.cysticfibrosis.org.uk/the-work-we-do/information-resources/resources-for-children-and-young-people/rosie-and-seb Cartoon animation https://youtu.be/fA7r_RDeYcI?si=R-eMHkMHdz49v7eO Video & animation https://youtu.be/AVg24S_pSmo?si=35wE1TrIer_kTSOv Cartoon animation https://youtu.be/ZlhyAkUx69U?si=xyamkGsI_Zp2mCYl Cartoon animation https://youtu.be/WuI72eMrIQI?si=wbiyibEenQ5DmnGH Animation/song https://www.youtube.com/watch?v=d-WVOBTW6iA Three story/colouring books Contact: Foundation Care https://www.foundcare.com/Patients/Educational_Resources.html Animation https://youtu.be/FMAOEOmLoUE?si=oyusQSWBJbpflstZ Comic book contact https://www.esiason.org/Cartoonanimations https://youtu.be/wMXlCsQlQU4?si=34sQnCS5qVO4MlFY https://youtu.be/BqQr1jYt_38?si=U18fJE-ofnPaql4z https://youtu.be/IiUinNavxWw?si=rQ3w-3FNYCu6E0s9 https://youtu.be/N8cLDLa35FQ?si=aE8jmw4HdbdM75tK https://www.youtube.com/watch?app=desktop&v=yw14_A6qW5E https://youtu.be/qFGOgU-ROT4?si=uXxP1BTVovgcoG5O https://youtu.be/DmSYhnKx2WU?si=ImRHu1Z5FxOL4N24 https://youtu.be/wI0R8WSmlig?si=wjcnsVVRmw3KMGq8 https://www.youtube.com/watch?v=JkNfpuJA8Tk https://youtu.be/UvN0lXL597w?si=IGeVl5-rvyc4skZO Comic book style video https://youtu.be/pNAr3jb7qYQ?si=7Wiell4gqCljLhEr Storybook https://cfsmart.files.wordpress.com/2015/11/pulmozymestorybook.pdf Information book https://chiesicysticfibrosis.co.uk/wp-content/uploads/2021/06/7_Ways_to_Stay_Well_ with_CF%E2%80%93for_Kids_2020_IE-CF-2000037_for_resources_section.pdf For animation contact Chiesi UK Comic books/videos available from https://www.cfsource.com/videos-resources Animation https://www.cfsource.com/videos-resources Animation https://www.cfsource.com/videos-resources Animation https://youtu.be/hNFeFyaAVu0?si=WlLnZ2dvwDKhj6NS Animation https://youtu.be/F3nH4GV2Zy0?si=x_xLLR8z2C1pNpge Storybook Glynne, A & Jain, N, 2017; (Publisher Franklin Watts)"> Animation https://youtu.be/MPJW63Ygieg?si=KPagC0DFVN7M5k5c Animation/video https://youtu.be/vSoutcJWJP4?si=waXT_H012tBpFVRV Colouring/Storybook https://www.cfnebulisercare.com/colouring-books.html Animation https://youtu.be/c6_UvffZE1c?si=QD9SXpTFFR37YgVm Colouring/Storybook https://www.cfnebulisercare.com/colouring-books.html Animation https://youtu.be/Pw_w9ZXrHsw?si=1QDoo-RdSoMVBta1 Colouring/Storybook"> https://www.cfireland.ie/support-resources/resources/publications Animation https://youtu.be/Oyva3Y5PjsQ?si=cMIhxmTYVj2QcPlX

Access to evidence-based information

The video entitled “How to clean and disinfect the nebuliser in cystic fibrosis” evolved from an evidence-based recommendations prepared by the Northern Ireland Working Group on Nebuliser Care and Hygiene in Cystic Fibrosis¹⁰. This working group comprises of healthcare professionals from both the adult and paediatric CF multidisciplinary teams within the Belfast Health and Social Care Trust. It was also evident from previous research in relation to nebuliser care within the adult CF community that there were a variety of approaches being practiced, some of which were not optimal and that some adult PwCF were unsure of how to clean their nebulisers due to the fact they were never personally informed as a child and that the responsibility remained with their family members to clean the nebuliser³⁶. It is important to instil best practices at an early age to promote ownership and responsibility of their own healthcare and good habits. The resources prepared on why and how to clean nebulisers shared such best practice, not only with the CwCF, but also their parent/career. Indeed, an adult PwCF informed the team that when reading the storybook to their non-CF grandchild it encouraged them to regularly clean and disinfect their nebuliser.

Readability of written healthcare information

It is important that the any information that the healthcare team prepare is targeted to the general age-related readability level and delivered in various digital and non-digital communication media formats. In relation to health literacy in general, it has been documented that the quality of health-related materials prepared to guide and inform patients and families, is varied³⁷. Furthermore, the readability of online materials healthcare information, as well as those prepared by healthcare providers, in relation to the adult population have been deemed “fairly difficult” due to the fact that they exceed the target readability parameter for the FKGL level for the general population, which is eighth grade³⁸. Although readability does not necessarily correlate with understandability, it is important that the composition of written materials is prepared at a reading level appropriate for the target audience, which from the analyses of these three materials was appropriate for the reading abilities of children of upper primary school age.

Involving children as co-designers

In these initiatives, the CF-MDT involved participation of CwCF when recording the voice-over for the animations. Such participatory involvement could be further expanded when designing future healthcare media to involve children further in the process as co-designers. When developing digital technologies for children including animations and interactive applications, CwCF participation throughout all the various design stages of healthcare materials will help to develop age-appropriate products in terms of design and content. The inclusion of different age groups of children as co-designers has many advantages, both to the child and the healthcare team³⁹, particularly if further interactive technologies are used. The child can further develop their health literacy and the team can gain an appreciation of a situation from an individual child’s perspective, in terms of their knowledge, concerns and needs, and factors which influence or promote their participation in healthcare situations, something which an adult alone cannot fully interpret³⁹. In such participatory design, the child can be involved in the storyboard design, in the case of animation videos, and in other interactive communication technologies which will further enhance and promote healthcare professional-child interactions, with the objectives to improve children’s understanding and participation in clinical procedures and tests³⁹.

In conclusion, paediatric healthcare teams have a responsibility to aid in the development of health literacy skills at an early age and promoting children to take an active role in their healthcare. The use of colouring/storybooks and animations are excellent media to initiate discussions and develop partnerships in paediatric healthcare in an engaging and informative manner. For optimum impact, the healthcare team should co-produce these media with the pediatric service user, their families and animation teams.