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

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.