The information needs of children having clinical procedures in hospital: Will it hurt? Will I feel scared? What can I do to stay calm?

Abstract

BackgroundChildren often have unmet information needs when attending hospital, and this can cause them anxiety and uncertainty. If children are prepared and informed about what will happen during a procedure, they tend to have a better experience. Finding out what children want to know before they attend hospital for procedures could provide significant benefits for children, their families, and healthcare professionals. This study set out to investigate children's perspectives of what information is important and valuable to know before attending hospital for a planned procedure.MethodsA “write and tell” activity sheet underpinned a semistructured qualitative interview with children attending hospital for a planned procedure. The interview focussed on the information children thought was important to know before a procedure. Data were analysed using content analysis techniques.ResultsOne hundred six children aged between 8 and 12 years old participated in the interviews. The children identified 616 pieces of information they thought would be of value to children attending hospital for procedures. These were inductively coded into three types of information: procedural, sensory, and self‐regulation. Children want to know detailed procedural and sensory information to actively construct a script of a procedure and then build on this with information about specific strategies to help them cope with and self‐regulate the situation.ConclusionThis study has identified three types of information children recognize as important in preprocedural preparation. Children construct an understanding of a planned procedure through actively scaffolding procedural, sensory, and self‐regulation information.

The Acceptability and Impact of the Xploro Digital Therapeutic Platform to Inform and Prepare Children for Planned Procedures in a Hospital: Before and After Evaluation Study

“…The DTx platform provides information about a broad range of hospital procedures, environments, and professionals; this is important as children can often encounter many different experiences when visiting the hospital, which may not be addressed by current digital health education and preparation interventions that focus on one specific procedure, for example, admission for surgery [ 13 - 16 , 29 ], or are designed around one specific hospital setting [ 30 ]. These interventions are of value but may not address the questions and concerns children have about procedures identified in previous research [ 9 ].…”

“…The DTx platform also includes several serious games with health themes. The DTx platform includes information about the procedure, environment and staff, and information on sensory aspects of a procedure (what a child may feel or experience) as well as information to help a child build‑coping strategies [ 9 ].…”

“…Xploro development has been informed by a user-centered design or person-based approach [ 23 ]. Children (n=105), health professionals (n=19), and parents (n=27) were involved in a previous qualitative study to inform the content (chatbot questions and answers, games, and language used), navigation (working through different elements or easily locating the procedure of relevance to them), and access to the DTx app (parents as gatekeepers and importance of timing of procedural information) [ 9 ]. This previous work was conducted in acknowledgment of the importance of qualitative research in informing the development of DTx interventions to ensure that they are engaging, acceptable, and effective [ 24 ] and that an investment in developmental work is essential before the formal evaluation of complex interventions [ 20 ].…”

“…Children’s distress and noncooperation during procedures can also result in longer appointments, delays to appointments, and referrals to psychological services, all of which have cost implications for health service providers. Children and their parents identify an unmet need for information about hospital procedures and interventions [ 8 , 9 ] and that such information would be valuable to help them know what to expect and how best to prepare themselves for a procedure [ 10 ].…”

Anxiety, distress, and pain in pediatric urodynamics

“…There is no standard for the preparation of children undergoing surgery or invasive procedures such as UDS. Through qualitative interviews with 106 children, Bray et al 23 found that “children construct an understanding of a planned procedure through actively scaffolding procedural, sensory, and self‐regulation information.” There are several formats for the delivery of this information, including displaying information in an instructional video, booklet or Internet‐based format, behavioral preparation strategies including coping/relaxation instruction, medical play, interventions by a child life specialist or some combination of these. Fortier et al 24 created an Internet‐based behavioral preparation program for children undergoing outpatient surgery, which led to reductions in preoperative anxiety.…”