This study emphasises the importance of the internet in the information seeking behaviours of parents whose children are undergoing surgery. Over a half of parents who participated in the telephone survey reported searching online for specific information about their child’s surgery before they were admitted, while around a quarter reported performing these searches after the surgery had taken place.
Previous studies into the information seeking behaviours of parents whose children are undergoing surgery have found that around 40–98% of parents search online for information about their child’s condition [10, 14–16, 24–26]. This study is the first to stratify parents depending on whether they searched for information online before or after their child’s surgery. The finding that parents were more likely to seek information online before surgery makes sense given that parents are likely to want to know more about their child’s condition, what the procedure will involve, and potential complications before surgical treatment is administered.
Data on pre-surgery information needs obtained through a survey like the one presented in this article could serve as a basis to tailor the kind of information provided to parents before surgery, which can be delivered through different means: during face-to-face encounters with clinicians; through paper leaflet provided to parents including a tailored description of the intervention; through explanations of surgical procedures using novel technologies, like 3D printing or virtual reality [29]; directing parents to reliable web-based information, including a specific indication to access the hospital’s website.
Previous studies have found that 17–18% of parents report that information found online has influenced their decisions about their child’s healthcare [7, 10]. Public search engines (e.g. Google) are often the starting point for parents looking for information about their child’s health [9, 14, 16, 19, 24]. However, search engines do not screen results on the basis of directing parents towards reliable medical information, and concerns have been raised over the quality of online health information accessed by parents [10, 14, 21–23]. Care provider websites, on which contents are written by clinicians, are used less frequently [11] but are considered by parents to be an accurate, reliable source of information [5, 24]. It has been suggested that the best way to ensure parents have access to high-quality information about their child’s health is to meet their information needs via care provider websites, where clinicians can ensure that relevant, accurate, and up to date information is displayed [10, 14]. The majority of parents had visited the care provider’s website before their child’s surgery, substantially more than in previous studies where less than 20% of respondents used their care provider’s website [5, 11, 24]. This higher proportion compared to that reported in previous studies could be partially explained by the high reputation of the OPBG website at the national level. Search engine optimization of the informative pages of the website, allowing specific pages to get a higher rank on the search engine result page, could have increased access to the hospital website for information on the procedure. Moreover, we collected a detailed description of the reasons why parents accessed the hospital’s webpage, and we found that a large proportion of them were interested in finding clinicians’ contact information and copies of medical records online. These insights will inform a redesign of the hospital website, to help parents find the information they need more easily.
A more detailed profiling of parents that were more likely to search for information online can facilitate an improved targeting of the information provided on the hospital websites or on reliable websites where parents can be directed to. Those that were more likely to search for online information were parents of children undergoing a more complex surgery, possibly because parents’ perceived risks of the surgery were greater; and parents of children who lived farther away from the hospital, possibly because they had less chances of having face-to-face contacts with the clinicians. Neither of these determinants of parental internet searching behaviours (more complex surgeries and living farther from the care provider) has been reported previously.
More than 60% of parents in this study felt that the information they found online had improved their understanding of their child’s condition requiring surgery, compared to 84–92% of parents in previous studies [14–15]. This prompts the need to improve accessibility and quality of information on surgery dedicated to parents. A small proportion of parents said that online information had increased their anxiety over their child’s condition. This may relate to findings, reported in previous studies, that some parents found online information to be ‘distressing’ [14]. This result reinforces the need of guidance by and feedback with clinicians or with family pediatricians regarding information found online. Around 30% of parents felt that information found online had improved the management of their child’s condition, perhaps because they discussed this information during consultations with clinicians, or because online information provided practical, easy-to-use guidance to manage the child before or after surgery.
This study has a number of limitations. First, we did not collect data about parents who did not respond to the survey, and this may imply a selection bias. Moreover, as with any survey where some respondents did not answer all of the questions, there was potential for self-selection bias in the sample of parents answering some questions. Data on online health information seeking refers to the parents of patients rather than the patients themselves. Children and adolescents also seek health information online [30] and it would be worth considering them in future research, particularly because there is evidence to suggest their information-seeking behaviours differ from those of their parents [25]. Finally, data were not collected on the socio-demographic characteristics of parents (e.g. gender, education level), as has been the case in some previous studies.