Preparing and informing children for hospital.
Uncertainty fuels anxiety:
Coming to hospital is anxiety-provoking for both children and their families. Entering an unfamiliar place, filled with unknown people and strange equipment, leads to children feeling frightened, scared and out of control [1,2]. A lack of knowledge and understanding exacerbates these feelings. Fear of the unknown, concerns about being separated from a parent, and anticipated pain all serve to raise anxiety levels [3,4,5], resulting in poor patient experiences and worse health outcomes [6].
Preparation reduces anxiety:
There is much evidence to demonstrate the benefits of effectively preparing children before their hospital visit [7]; timely preparation helps to reduce anxiety and improve patient experiences. When children have an understanding of what will happen, they have lower levels of anxiety and are able to cope better - for example, they are less likely to be upset or need to be physically restrained or held [8,9,10].
Children do not currently receive effective pre-procedural preparation:
Children have a recognised right to receive information to facilitate them in understanding and partaking in decisions of relevance to them (United Nations). Despite this, children continue to be poorly prepared and ill-informed prior to healthcare encounters [11,12]. Healthcare professionals, constrained by time, often have limited or no opportunity to deliver effective pre-procedural preparation and information face-to-face. In most circumstances parents or caregivers are relied upon to relay information between healthcare providers and their child [9].
Parents as “information gate-keepers”:
Caregivers routinely act as “information gate-keepers” – taking on the responsibility of providing information and preparing their child for hospital. For myriad reasons this is often suboptimal for children, families and healthcare organisations. Adults with little or no previous healthcare knowledge or experience may be unsure themselves what will happen making it difficult to explain it to their child. They may struggle with how to present complex information to young children or worry about “information overload” causing their child to be more anxious [13]. For caregivers, shouldering the burden of responsibility creates extra stress during an emotionally-laden time; for healthcare organisations the result is ill-prepared children who are more resource-intensive (e.g. requiring premedication or physical restraint) and at risk of poorer outcomes.
What can we do to improve this situation?
Children are not receiving the information they want or need prior to hospital visits and caregivers are struggling to plug this “information hole” [14]. Provision of face-to-face preparation from healthcare professionals is the gold standard of care, but this is resource-intense and beset by the negative impacts of health inequalities on access to care (e.g. prohibitive travel costs). We believe that innovations in digital health technology are the next step to addressing this issue. The Little Journey app, delivering information articles, virtual tours and coping skills development techniques, empowers families through knowledge. By providing children and families with the tools to effectively prepare for hospital at a time and location convenient to them, we believe that we can support all children, all across the world, to better health.
References:
- Kilkelly, U., & Donnelly, M. (2011). Participation in healthcare: The views and experiences of children and young people. The International Journal of Children's Rights, 19, 107.
- Duff, A. J., Gaskell, S. L., Jacobs, K., & Houghton, J. M., (2012). Manage- ment of distressing procedures in children and young people: Time to adhere to the guidelines. Archives of Diseases in Childhood, 97(1), 1–4. https://doi.org/10.1136/archdischild‐2011‐300762
- Platt R, Williams SR and Ginsburg GS (2016) Stressful life events and child anxiety: examining parent and child mediators. Child Psychiatry and Human Development 47(1): 23–34.
- Claar RL, Walker LS and Barnard JA (2002) Children’s knowledge, anticipatory anxiety, procedural distress, and recall of esophagogastroduodenoscopy. Journal of pediatric gastroenterology and nutrition 34(1): 68–72.
- Koukourikos K, Tzeha L, Pantelidou P, et al. (2015) The importance of play during hospitalization of children. Materia socio-medica 27(6): 438.
- Kain ZN, Caldwell-Andrews AA, Mayes LC, et al. (2007) Family-centered preparation for surgery improves perioperative outcomes in children; a randomized controlled trial. Anesthesiology: The Journal of the American Society of Anesthesiologists 106(1): 65–74.
- Jaaniste T, Hayes B and Von Baeyer CL (2007) Providing children with information about forthcoming medical procedures: a review and synthesis. Clinical Psychology: Science and Practice 14(2): 124–143.
- Bray L, Snodin J and Carter B (2015) Holding and restraining children for clinical procedures within an acute care setting: an ethical consideration of the evidence. Nursing inquiry 22(2): 157–167.
- Bray L, Carter B, Sanders C, et al. (2016) Holding children for clinical procedures: perseverance in spite of or persevering to be child-centered. Research in Nursing & Health 39(1): 30–41.
- Coyne I, Amory A, Gibson F, et al. (2016) Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange. European Journal of Cancer Care 25(1): 141–156.
- Bray L, Appleton V and Sharpe A (2019b) “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 pro- cedure. Journal of Child Health Care 23(4): 626–638.
- Smith L and Callery P (2005) Children’s accounts of their preoperative information needs. Journal of Clinical Nursing 14(2): 230–238.
- Young B, Dixon-Woods M, Windridge KC, et al. (2003) Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. Bmj: British Medical Journal 326(7384): 305.
- Bray L, Appleton V, Sharpe A. (2022) ‘We should have been told what would happen': Children's and parents' procedural knowledge levels and information-seeking behaviours when coming to hospital for a planned procedure. J Child Health Care. 2022 Mar;26(1):96-109.