eHealth literacy and preferences for eHealth resources in parents of children with complex CHD

Abstract

A total of 132 parents (83 mothers, 49 fathers) completed the survey (response rate: 50%). Mothers (96%) were more likely to access eHealth resources than fathers (83%, χ2=6.74, p=0.009). Despite high eHealth resource use, eHealth literacy was relatively low, with results demonstrating considerable and widespread gaps in awareness of, access to, and communication about eHealth resources. Over 50% of parents reported that decisions regarding their child's healthcare were influenced, to some extent, by web-based resources. Barriers to doctor-patient communication about eHealth included limited consultation time and concern about doctors' disapproval. Participants demonstrated a strong desire for "eHealth prescriptions" from their child's healthcare team, and perceived a wide range of eHealth topics as highly important, including treatment-related complications as well as physical, cognitive, and emotional development in children with CHD. Discussion Results suggest a need for stronger, more proactive partnerships between clinicians, researchers, educators, technologists, and patients and families to bring about meaningful innovations in the development and implementation of eHealth interventions in paediatric cardiology.

Online Health Information Seeking by Parents for Their Children: Systematic Review and Agenda for Further Research

“…The papers were sorted into 3 groups based on the focus of the paper ( Table 1 ). A total of 13 of the studies focused on OHIS related to a specific disease or disease cluster, including asthma [ 34 ], attention-deficit/hyperactivity disorder [ 35 ], brachial plexus birth palsies [ 36 ], congenital heart disease [ 33 , 37 , 38 ], diabetes [ 39 ], hearing loss [ 40 ], hydrocephalus [ 41 ], scoliosis [ 42 ], skin disorders [ 43 ], and rare diseases [ 44 , 45 ]. An additional 13 studies addressed specific circumstances, mainly prior to a surgical procedure [ 46 - 51 ], after childbirth [ 52 ], 24 hours before an emergency department visit [ 53 ], during stay in a neonatal intensive care unit [ 54 ], in a pediatric outpatient clinic [ 55 , 56 ], in palliative care [ 57 ], and regarding attitudes towards human papillomavirus vaccination [ 58 ].…”

“…The samples consisted of highly educated parents, with more than 50% [ 33 , 34 , 36 , 41 , 44 , 48 , 54 ] and up to more than 75% of parents holding academic degrees [ 52 , 58 , 63 ], but 14 studies did not report any educational levels. The proportion of persons with only primary education varied between 0% [ 52 ] and 21.9% [ 57 ] among the studies that reported on education levels.…”

“…Only 3 studies explicitly distinguished between general OHIS and specific OHIS [ 36 , 53 , 62 ]. Recent studies from 2017 or later showed the highest prevalences, with around three-fourths [ 51 , 59 , 60 ] to roughly 9 out of 10 parents who searched for health information related to their child [ 14 , 33 , 35 , 44 ]. Likewise, the health-related internet use among parents of children with rare diseases seems to be relatively high [ 44 , 45 ], even for older studies that deal with rare conditions [ 36 , 37 ].…”

Parents’ perceptions of counselling following prenatal diagnosis of congenital anomalies of the kidney and urinary tract: a qualitative study

“…Reflecting the high Internet usage for health‐related information in the current era , most parents did access web‐based information on CAKUT. However, there were concerns about the quality of eHealth information.…”

“Will she live a long happy life?” Parents' concerns for their children with Fontan circulation

“…Previous research identify interventions which focus on striving to change families' illness perceptions and coping mechanisms, as most effective in reducing parental stress [ 21 ]. Future research could explore the efficacy of newer methods using social media or e-health resources [ 22 , 23 ]. Given that parenting stress has also been linked to family resources [ 7 ], these findings highlight the important role which community support organizations could play in providing social and financial support to these families.…”