As noted above, parents are a particular type of caregiver with their own needs and requirements for CHI. With children and teenagers, just as with seniors, the needs of the one who is cared for drive those of the caregiver. Parents, as a group, got online early. As early as 1999, the marketing research firm Cyber Dialogue found that parents were more likely than non-parents to use the internet for fun (73 vs. 64%) and also more likely to do their shopping online, as opposed to offline (Smith, 2008). In 2006, the Pew Internet and American Life Project found that 54% of health information seekers with children under 18 at home were searching for information on behalf of another person - and doing so more than the 44% who didn’t have children at home (Fox, 2006).
Some parental information needs relate to keeping a healthy child healthy or prevention of illness, for example, topics like vaccination, exercise, and nutrition. ParentsPlace.com was one of the hundreds of communities on the site called iVillage, among the “most popular female-oriented” sites during the early years of the internet (Tierney, 1998). In 2005, iVillage contained 278 separate sub-bulletin boards devoted to parent-driven topics ranging from premature infants to night terrors, but a separate Adult Health section within ParentsPlace covered such completely adult issues as natural family planning and diabetes self-care (for parents, not children) (Smith, 2008).
In 2019, Lee (2019) surveyed 851 mothers ages 18-45 (in three demographic groups: US-born, Korean-born residing in Korea, and Korean-born immigrants to the US). These were all parents of healthy children, a population that has been studied only very little in any country. Ninety-eight percent of these mothers had sought health information from any source in the last 6 months. Korean natives in both Korea and the US searched quite frequently for health information, 15% of the immigrants and 18% of mothers in Korea doing so more than once a day. In contrast, most US-born mothers looked online for this information just a few times a month.
Personal characteristics affect parental source preferences for health information. For example, the length of time that one has been a parent is significant. First-time mothers have been found to prefer electronic media (websites, mobile apps) over written materials or pamphlets as sources of health information - but personal contact with a healthcare provider is the most important source of all (Gazmararian et al., 2014). Lee (2019) asked her Korean residents, immigrants to the US and US-born survey respondents to rate 19 different sources in different media - including interpersonal sources like doctors and nurses, as well as digital sources, such as social media and social networks. In seeking health information, all three groups of mothers used the World Wide Web the most often. Both Korean subgroups, but not the US subgroup, used Twitter often. Lee (2018) also found a distinct preference for online communities as information sources among both Korean subgroups - probably due to the availability of Korean-language information online.
Parents of ill children have different needs: when a child is sick, their mothers or fathers need to communicate with pediatricians; that initial contact with the pediatrics practice (from a phone call to a Virtual Visit) often establishes whether further contact with the healthcare system is required. Parents are important mediators between their children and the healthcare system, even as children grow into adolescents. Eighty-three percent of logins to portals of adolescent patients were found, in one study, to be done by their parents (Steitz et al., 2017). For this reason, parents have been the subject of much research. The systematic review conducted by Morrison et al. (2013) revealed that about one third of parents presenting in US emergency departments with their children have low health literacy. A later review by Keim-Malpass et al. (2015) found that the majority of health literacy studies assessing parents of children with special healthcare needs had been done in the domain of asthma, but also for glaucoma, type 1 diabetes, and ADHD. The health literacy levels of parents are important to understand, not only because parents are caregivers, but because child health promotion campaigns need to be understood, and parents are gatekeepers of information for their families (Brega et al., 2016). Parents of children living with chronic illnesses are caregivers and consumers who engage with patients on a daily basis and mediate between the worlds. This requires a particular kind of informational support for caregivers, as well as support in discussing diseases and treatment options with their children.
Examples of consumer health informatics research done with parents of young patients include a personal health record (PHR) study focusing on chronic conditions (diabetes, juvenile idiopathic arthritis, and cystic fibrosis) (Byczkowski et al., 2014); social media as an information source for families of autistic children (Khudair & AlOshan, 2015); and search behaviors driving traffic to a website for parents of injured children called AfterThelnjury (Yang et al., 2011). The needs and demands of users of many different age groups and household compositions must be considered in design, rollout, and outreach about these technologies. Ronis et al. studied 184 parents in pediatric practice and found positive attitudes toward portals in this group - whether they used them or not - but 36% of these parents indicated that they had never used portals because they had not known they were available. The authors commented on “persistently low levels of awareness” on the part of patients and caregivers, simultaneous with “low levels of preparedness” on the part of healthcare providers. Healthcare systems have to promote these products in order for patients - and their family members - to become engaged (Ronis et al., 2015).
Exemplar Technology: MyChart Bedside
An example of a parent-centered CHI tool is MyChart Bedside. Bedside is a patient portal designed to be used in an inpatient hospital setting. Like MyChart, another Epic Systems”“ product, Bedside allows users to view portions of the official medical record, including current medications (in real time). The difference with Bedside is that the users are parents of inpatients - or the patients themselves, if they are adolescents. Parent users of Bedside comment that Bedside helps them engage with their childrens care team and gives them “a sense of control” (Kritz, 2019). The University of Wisconsin MyChart Bedside project and associated publications can be seen online at https://cqpi.wisc.edu/research/health-care-and-patient-safety-seips/mychart-bedside/#project-home. A toolkit for potential implementers can be found at https://www.hipxchange.org/InpatientPortal.