Parents and carers’ experiences of seeking health information and support online for long-term physical childhood conditions: a systematic review and thematic synthesis of qualitative research

Abstract

ObjectiveTo systematically review and synthesise qualitative research exploring parents/carers’ experiences of seeking online information and support for long-term physical childhood conditions.DesignSystematic review and thematic synthesis of qualitative research.Data sourcesMedline, CINAHL, Embase, PsycINFO and the International Bibliography of the Social Sciences were searched from inception to September 2019. We used thematic synthesis to analyse findings.Eligibility criteriaPrimary research papers presenting qualitative data collection and analysis, focusing on parents/carers’ experiences of seeking health information and support from online resources for long-term physical childhood health conditions. No language restrictions were placed.Results23 studies from seven countries met inclusion criteria and were included in the synthesis. Included studies presented data collected through interviews/focus groups with 559 parents/carers; free-text surveys and essays with 26 parents/carers and 2407 messages from online support groups. Parents/carers developed a variety of strategies to obtain information and support online, based on personal preferences, appraisal of trustworthiness, perceived needs and previous experiences online. Many parents sought the benefits of online information and support, which included reassurance and validation from online communities, and feeling they had greater knowledge about their children’s conditions. Some concerns and perceived risks were discussed, which often stemmed from prior unsatisfactory experiences of seeking information and support online, consultations with health professionals and seeing distressing stories online.ConclusionMost parents/carers were successful in obtaining information and support online. Many continued to share experiences with other parents/carers online. The need for information was particularly apparent early after diagnosis of the condition, whereas the need for peer support continued. The potential concerns and perceived risks with information and support online were especially apparent among parents/carers of children with life-limiting long-term conditions. Findings may be useful for health professionals to facilitate discussions regarding use of online resources, and researchers designing online health resources for parents/carers.PROSPERO registration numberCRD42018096009.

Parental experiences of eczema advice in online parenting forums: a qualitative interview study

“…There has been a rapid increase in the use of online forums (otherwise known as online support communities, online support groups, and social media websites) for health-related purposes in the past two decades 1 . Parents and other primary caregivers (hereafter referred to as 'parents') have been shown to place high value on health information rooted in the lived experiences of those living with or caring for others with health conditions, and that accounts of these experiences are readily accessible using online parenting forums 2 . The wealth of social support exchanged in online parenting forums has been found to reduce parents' fears, isolation, and worries when caring for an unwell child, as well as increase parents' confidence in caring for their child 2,3 .…”

Characteristics of Acute Childhood Illness Apps for Parents: Environmental Scan

“…In conjunction with Google searches, this behavior is used to establish a cause of illness, access means of assessing symptom severity, and exercise prudence regarding visiting a physician [ 14 ]. Parents also search for support through web-based forums, and this means of information gathering provides additional reassurance and validation [ 15 ].…”

Health-related Internet Use by Caregivers of Children and Adolescents With Cancer

“…In particular, parents of children with chronic, acute, or rare diseases had a high need for support groups. Another recent systematic review by Treadgold et al examined how parents and carers of children with long-term physical health conditions seek information and support online 7. Parents reported unique benefits of seeking support online, including building relationships and feeling validated.…”

“…A growing body of research shows that across specialties and in various clinical settings, parents of pediatric patients are engaging in internet use related to their child's health. [4][5][6][7] A recent systematic review by Kubb et al 2 examined patterns of internet use by parents of pediatric patients, focusing specifically on the act of searching for information about their child's health, termed online health information seeking (OHIS). The prevalence of OHIS ranged from 12% to 99% across 33 studies published between 2000 and 2018.…”

“…Another recent systematic review by Treadgold et al examined how parents and carers of children with long-term physical health conditions seek information and support online. 7 Parents reported unique benefits of seeking support online, including building relationships and feeling validated. This study demonstrates that using the internet to seek information and using the internet as a source of support can be considered 2 distinct but overlapping categories.…”