(Reuters Health) - Young patients and their parents may often disagree on what the child’s experience in the hospital was really like, according to a study in the UK that found differing perceptions on issues such as safety, decision-making and privacy.
Including children in these kinds of post-treatment surveys isn’t typical, but it also isn’t difficult and could help doctors understand how to better serve their patients under age 18, the study team writes online February 6 in Archives of Disease in Childhood.
“It’s increasingly recognized that the best healthcare is based on a partnership between health professionals, patients and their families,” said lead study author Dr. Dougal Hargreaves of the University College London Great Ormond Street Institute of Child Health.
“Achieving this goal depends on listening to patients and their families in order to understand what matters most to them and to improve their experience of healthcare,” he told Reuters Health by email.
Hargreaves and colleagues analyzed more than 6,200 surveys given in National Health Service hospitals in 2014 regarding the experiences of patients between ages 8 and 15. The surveys contained two sections, one for parents and one that could be completed by young patients themselves, by parents or jointly.
Nearly 60% of the patients completed the youth section of the survey themselves, and 28% responded jointly with their parents.
Parents and their children tended to agree on the quality of pain relief the child received and the quality of the overall experience, the researchers found. However, they tended to disagree on questions about the quality of communication with hospital staff, involvement in decision-making, feeling safe and having adequate privacy.
“A bad experience with a doctor or dentist as a young child may be remembered for decades and may put people off seeking care when they need it,” Hargreaves said.
“For young people with a long-term condition like diabetes or epilepsy, their long-term outcomes can be affected by attitudes and habits they picked up when they first learned to manage their condition as a teenager,” he added.
The study authors suggest including children over age 8 in patient surveys, as long as the wording is adapted and questionnaires are designed appropriately for pediatric patients. Hargreaves and colleagues are working on tools to share decision-making between children and parents and to develop what they call “child/young person-friendly” versions of patient experience surveys for different healthcare settings.
“Being in the hospital can be an unpleasant and frightening experience for a child,” Hargreaves said. “Listening to them shows that the way they feel is important to us, and it allows us to help them through their hospital experience.”
In a 2013 research review, Dr. Anne-Emmanuelle Ambresin of Lausanne University Hospital in Switzerland and colleagues outlined several ways to make surveys and healthcare more friendly for youth. They identified eight areas that are central to a young person’s positive experience of care, including accessibility, staff attitude, communication, medical competency, guideline-driven care, age appropriate environments, involvement in decision-making and health outcomes.
“Staff attitudes, which included the notions of respect and friendliness, appeared universally applicable,” said Ambresin, who was not involved in the current study.
“Other domains, such as an appropriate environment, including cleanliness, were more specific to particular contexts,” she added. “Measures of youth-friendly healthcare should address these.”
Arch Dis Child 2018.