In this blog for Week 2 of the CYP Series, Professor Lucy Bray @LucyBray9 from Edge Hill University discusses ‘What does health literacy have to do with children’s nursing?’
What does health literacy mean?
Health literacy, put simply, is the skills, knowledge and confidence people have to access, understand and use health information to make health related choices1. More broadly, health literacy is about so much more than accessible and simple health information, it considers how people and communities can access and use health services and resources and be empowered individually or collectively to improve health through social action and the political system2. Health literacy can contribute to reducing health inequalities and enable children and young people to maximise their capabilities and have control over their lives3.
It is important to acknowledge that health literacy is not just an individual static characteristic; something a person ‘has’ or ‘doesn’t have’. It is influenced by the context they are in and the people, policies and systems around them 4,5. Understanding the dynamic nature of health literacy is important when working with children and young people, as their ability to process information and participate in making choices and decisions will vary in certain settings or when they are feeling unwell or overwhelmed. Children’s health literacy is also impacted by the health literacy of their caregiver. In England, more than 4 out of 10 adults struggle to understand health information and this is even higher when health information includes numerical information6.
How does health literacy relate to children’s rights?
As health literacy refers to a child or young person’s ability to access and use information to participate in decisions about their health and care, its importance is enshrined within every child’s right to the best possible health and their right to access health information and to freely express their views, feelings and wishes and to have their views considered and taken seriously7.
Despite having these rights, children and young people repeatedly tell us that they are not as involved in decisions about their health and care as they would like to be8 and children report feeling marginalised and excluded from some health care services and agendas9, particularly those from under-served communities10. When surveyed health professionals show low levels of knowledge around children’s rights and how these relate to clinical practice11 and so in order for ‘every child to be given the best start in life’3, professionals, services and policies need to do more to implement children’s rights and address the multiple and intersecting exclusions many children currently face.
How can health literacy practice be applied to nursing?
Health literacy is fundamental to so many parts of paediatric practice, for example, how a new diagnosis is communicated to a child and their family, how a child is prepared for a procedure, how a child is discharged home with medication and how young people and their families navigate complex health care services. As highlighted above, whilst it is important to consider a child’s individual health literacy in all these examples of nursing practice, we need to also consider how ‘health literate’ we are as health professionals and organisations. When we think about the services we deliver, how easy is it for a young person or caregiver to use a website, to make an appointment and call through to a service or join in a consultation which includes complex information and medical language? It is important that all children and young people have equitable opportunities to live healthy lives and know that they have rights within health care services. Services and systems can be quick to judge and label a child or family as ‘not engaging’, without considering how accessible the service being offered is and possible reasons for not attending.
- Do the letters or texts require people to read and ‘opt in’ to access and stay in services?
- Do we check that children and/or their caregiver can read and understand the leaflet we hand out at discharge or with medication?
- Do we consider the costs and travel difficulties which may be incurred by families travelling to a service many miles from where they live?
- Do we offer translations, verbal or easy read versions of all resources?
- Do we regularly use the ‘teach back’ technique where we ask a person to tell us what they have heard and understood about the information we have shared with them?
- Do we ‘chunk and check’ the information we provide and allow children and caregivers time to process the information?
- Do we actively encourage children and caregivers to write down questions before they come to an appointment so that they feel empowered to ask questions?
- Do we make sure that all services are culturally sensitive and that all people feel equally welcomed and valued?
- Do we assume competence and work flexibly to ensure young children or those with additional needs can participate and have a say in their health care?
These are all relatively simple and important considerations for delivering person-centred care and enabling children and young people to access information and health care services and participate in decisions about their care.
Why does this matter?
When children are involved meaningfully in decisions about their care, they are more likely to trust their health care team, more motivated to follow prescribed regimes12 and more likely to have positive experiences and outcomes13. Feeling informed, involved and respected can make a big difference to the experiences and outcomes of children, young people and their families. It is important for professionals to critically examine and advocate for children’s health literacy and rights and look at how the systems and organisations within which we work facilitate or hinder children’s rights and their ability to participate individually or collectively. These are often small changes which can make a big difference!
References
1 – Nutbeam, D (2008) The evolving concept of health literacy. Social science & medicine, 67(12), pp.2072-2078.
2 – Sykes, S., Wills, J., Rowlands, G. and Popple, K., (2013) Understanding critical health literacy: a concept analysis. BMC public health, 13, pp.1-10.
3- Marmot et al (2020) Health Equity in England: The Marmot Review 10 Years On. Institute of Health Equity
4 – Edwards, M., Wood, F., Davies, M. and Edwards, A., (2015) ‘Distributed health literacy’: longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long‐term health condition. Health Expectations, 18(5), pp.1180-1193.
5- Lloyd, J.E., Song, H.J., Dennis, S.M., Dunbar, N., Harris, E. and Harris, M.F., (2018) A paucity of strategies for developing health literate organisations: a systematic review. PloS one, 13(4), p.e0195018.
6 – National health Service. (2023) Health Literacy Toolkit. https://library.nhs.uk/wp-content/uploads/sites/4/2023/06/Health-Literacy-Toolkit.pdf [accessed 05/09/24]
7 – United Nations. (1989). Convention on the Rights of the Child (UNCRC). New York: Office of the High Commissioner for Human Rights
9 – Hargreaves, D.S. and Viner, R.M., 2012. Children’s and young people’s experience of the National Health Service in England: a review of national surveys 2001–2011. Archives of Disease in Childhood, 97(7), pp.661-666.
10 – O’Donnell, P., Tierney, E., O’Carroll, A., Nurse, D. and MacFarlane, A., 2016. Exploring levers and barriers to accessing primary care for marginalised groups and identifying their priorities for primary care provision: a participatory learning and action research study. International journal for equity in health, 15, pp.1-16.
11 – Georgousopoulou, V., Voutetakis, A., Galanis, P., Kourti, F.E., Zartaloudi, A., Koutelekos, I., Dousis, E., Kosmidis, D., Koutsouki, S., Pappa, D. and Igoumenidis, M., 2023. Assessing the respect of children’s rights in pediatric hospitals. Medicina, 59(5), p.955.
12 – Ehrich, J., Pettoello-Mantovani, M., Lenton, S., Damm, L. and Goldhagen, J., 2015. Participation of children and young people in their health care: understanding the potential and limitations. The Journal of Pediatrics, 167(3), pp.783-784.
13- Koller, D., Espin, S., Indar, A., Oulton, A. and LeGrow, K., 2024. Children’s participation rights and the role of pediatric healthcare teams: A critical review. Journal of Pediatric Nursing, 77, pp.1-12.