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

Eligibility criteria

We sought studies that explored parents’ experiences of using the internet for information and support about long-term physical childhood condition(s) (table 1). To be eligible for inclusion, studies had to present qualitative data collection and analysis methods and qualitative data. Studies that used a mixed methodology were included if they comprised a qualitative component substantive enough to perform a qualitative analysis.

Search strategy

Five electronic databases were searched (Medline, CINAHL, Embase, PsycINFO and the International Bibliography of the Social Sciences) from the earliest date possible to September 2019. The Cochrane Library of Systematic Reviews and PROSPERO were also searched to check for any ongoing similar reviews. A comprehensive search strategy was developed with a medical librarian from the University of Southampton for each database (table 2). Search terms seeking to identify only qualitative research were initially included in search strategies, but we found that they did not improve the search results so were subsequently removed. Others have similarly found subject-specific search strategies rather than methodology-based strategies to be more effective in identifying all relevant studies reporting qualitative findings.¹¹

Study screening methods

One author (BMT) screened the titles and abstracts of all identified papers against the inclusion criteria. Duplicates of papers and those that failed to meet the inclusion criteria were eliminated during this stage. A second author (ET) screened 20% of the titles and abstracts to check for consistency. Full papers for the remaining identified studies were retrieved and assessed for eligibility (see figure 1).

Quality appraisal and data extraction

One author (BMT) extracted information from the included studies and tabulated it. Assessors (BMT, IM, MS, ET) independently assessed the quality of the included papers, using the Critical Appraisal Skills Programme quality assessment tool for qualitative research.¹² Any discrepancies were discussed with the research team.

Thematic synthesis

We followed thematic synthesis for the analysis of the included studies,¹³ as this method has been successfully used for synthesising qualitative research in systematic reviews in health.^14–19 Thematic synthesis consists of three stages. In stages 1 and 2, we explored and described the data. One author (BMT) read and re-read included papers, then inductively coded each line of the studies’ findings according to their content and meaning to develop an initial coding frame. Participants’ original data excerpts, as well as the authors’ descriptions of findings, were coded in the latest version of NVivo. The coding frame was then discussed and refined within the research team (BMT, ET, IM, AR, NC, MS). In stage 3, we aimed to ‘go beyond’ individual study findings through developing descriptive themes initially and, subsequently, generating analytical themes.

Patient and public involvement

We involved an experienced public contributor with experience of eczema (AR) in the aim, design, analysis and write-up stages of the review. AR has a great deal of experience with online support groups, and has often highlighted that the online environment can be very supportive while also potentially bewildering. The contributor’s experiences and preferences therefore helped shape the aim and design of the review: to explore parents’ experiences of seeking information and support online for long-term physical childhood conditions.

Study selection

The database searches resulted in 2981 records after excluding duplicates. A total of 23^20–42 studies met all inclusion criteria and were included for thematic synthesis (figure 1).

Study characteristics

All studies were published in English between December 2004 and July 2019, with the majority of studies (n=14) being published since April 2016. A total of 11 studies were conducted in the Americas (USA,⁶ Canada,⁴ Brazil¹), 10 studies were conducted in Europe (UK,⁵ Sweden,² The Netherlands² and Norway¹) and 2 studies were conducted in Australia. The 23 studies presented the experiences of 559 parents captured through interviews and focus groups, 26 parents through free-text surveys and essays and analyses of 2407 messages that had been posted by parents in online support groups (eg, online forums, social media sites and blogs), though it should be noted that not all studies provided sample size information (table 3).

Quality of studies

The quality assessment of the included studies revealed that all studies met most quality indicators. All studies had clear statements of the aims of the research, qualitative methodology was appropriate in all studies and was collected in a way that addressed the aims. We did not exclude any studies based on quality of reporting.

Synthesis of results

The papers included in this review broadly focused on how parents of children with long-term physical conditions use online resources for health information and support, and what they gain (or not) from using online resources. By synthesising the papers’ findings, we interpreted three main analytical themes: (1) developing personal strategies for obtaining and appraising the online world; (2) feeling supported and informed by the online world and (3) perceived risk and concerns about the online world.

Figure 2 illustrates the analytical themes and descriptive themes, and table 4 lists all analytical and descriptive themes, along with references to the relevant papers.

How do parents develop personal strategies for obtaining and appraising information and support in the online world?

Parents were found to have personal preferences for certain types of websites and their content.21 23 26–28 31–42 Parents reported often favouring certain websites over others, which included official health information sites, charity websites, research sites, online discussion forums and social media sites. From within the different types of websites, parents also expressed informational preferences including medically moderated content, personalised advice and content dedicated to the condition without advertisements and other irrelevances. Parents also expressed functional preferences for online resources which included closed/private communities, live chat rooms and notifications for new content. ‘For me, this is a funnel. This group funnels you. People can get quick answers, but if you want more in-depth information, we always do the link to a website because it has way more in-depth information than what you can get in the group online.’²⁸ (Gastro-oesophageal reflux disease, interview and online forum study)

Parents also described a variety of searching methods which enabled them to obtain online information and support.21 23 28 30 31 33 34 36–38 41 42 Some visited the internet with a specific question in mind, others reported typing in keywords that they had heard during their medical consultations and others posted questions in a variety of online resources and combined the information with advice received offline. ‘The same question on WhatsApp, Facebook and at the school.’³¹ (Various conditions including cystic fibrosis, metabolic conditions and other disabilities, interview study)

Parents also reported appraising the trustworthiness and credibility of online resources, which influenced whether they decided to use the online resource.21 23 26–28 30 31 33–37 42 Some had reported more specific tactics such as matching up information from a variety of websites, checking the affiliation/source of the website or the background of individual posters, the possible sales and marketing intentions behind the websites and comparing the advice with existing knowledge, whereas others implied that the reliability of online resources had been at least somewhat on their mind. ‘[The website] that came up first, they’ve probably got advertisements in there… everything is paid, so I am a bit sus on that.’²¹ (Subacute conditions, think aloud and interview study)

Parents’ perceived needs for information and support also appeared to influence whether and how they searched for information and support online.20–22 25–28 32–42 This involved the present stage and severity of their child’s condition, such as a recent diagnosis or a change in symptoms, and an unsatisfying recent medical consultation. ‘Five minutes after we got the diagnosis… we got on the computer. I didn’t know what else to do.’⁴¹ (Genetic conditions, interview study)

Finally, parents also expressed past positive experiences with the online world, and how these often encouraged continuous use.20 21 23 26–28 30 34–42 Experiences included the internet’s convenient and accessible nature for obtaining advice any time of the day, through a variety of mediums, for exploring sensitive topics and within the protection of anonymity and general successes of obtaining desired information. ‘You know when you post even though it’s like 5:00 in the morning, you’ve got other people that are also awake and even though it is 5:00 in the morning, they respond as well within a timely manner.’²⁸ (Gastro-oesophageal reflux disease, interview and online forum study)

How and why do parents feel supported and informed by the online world?

The sense of community from using social media sites, discussion forums and blogs for peer support was also emphasised.22–29 32 34–39 42 Connecting with other parents with similar experiences online was described as comforting, and often reduced their loneliness and sorrow. The importance of building trust and relationships in online communities was also reported, which enabled parents to gain more advice from one another, to share common language, to be treated as equals and to constantly be there to support one another. Parents also demonstrated that exchanging experiences online helped them to feel more reassured and validated about their situations. Also, parents expressed how online information and support that derives from others’ experiences is invaluable, which often lacks in health professionals’ advice.

…I’m so happy that I found this page. For me to share & read about that there are other parents in my shoes. It breaks my heart watching my little girl try so hard to walk & play with other kids… Her condition has really taken a toll on me. Physically, mentally, & emotionally. I cry a lot. I’m just relieved there’s parents on here that I can open up to.²² (Cerebral palsy, online forum study)

Parents across nearly all papers emphasised feeling informed through accessing and using information and support obtained online.20–26 28 29 31 32 35–42 The sense of feeling better informed was reported to derive from parents’ development of condition-related knowledge including information about diagnosis, prognosis, triggers and treatments. Parents often reported that their increase in medical knowledge helped them to feel in more control of managing their children’s condition and to cope with stress and during uncertain times such as changes in symptoms and treatments. Accessing information online was also reported to facilitate parents in subsequent medical consultations, through helping them to feel more equipped to understand what their health professionals were telling them, to structure questions and to recommend plans for their children’s treatments. Parents also reported feeling good about sharing their own experiences online about managing their children’s conditions, such as with treatments, consultations and coping methods. ‘I think it allows you to then make a decision on how serious something might be or whether you need to take action straight away or if it’s something that you can potentially wait up and see what happens.’²¹ (Subacute conditions, think aloud and interview study)

How and why do parents develop concerns and perceive potential risks from seeking information and support online?

While less common than positive accounts of feeling supported and informed, some parents reported the negative side to information and support online. Some parents reported that prior unsatisfactory experiences of seeking information and support online had discouraged them from using online resources.20 21 24 26–28 30 31 33–35 37 38 40–42 Previous experiences included not being able to find their desired information and support, being overwhelmed by the volume of content online, feeling that the internet does not replace real people and a lack of digital literacy skills and experience. ‘I choose not to (go online) because there are so many diverse opinions out there. There’s so much garbage out there.’³⁷ (Cancer, survey and interview study)

Parents also reported experiences of being steered away by health professionals from using the internet for information and support.21 25 28 31 33 37 This was predominantly in papers that focused more on life-limiting conditions (eg, needing surgery in first year of life, gastro-oesophageal reflux disease, cerebral palsy, neurological, cancer).

(Physician B) was very adamant, ‘Don’t you dare touch that internet, do not look at it, do not—you listen to what I say, I’m the boss, and this is the way it’s going to run… I just wanted the definition … I just wanted to know what the words meant….’³³ (Conditions requiring neurosurgery, focus group study)

Finally, some parents reported that the fear of what they could find out online prevented them from using online resources for information and support.21 24 27 28 33 37 38 41 Some reported having read distressing stories in the past, and others simply did not want to risk uncovering distressing information that they could relate to. These papers also focused more on life-limiting conditions (cancer, type 1 diabetes, rare genetic conditions, neurological).

I was careful with going online because I think the internet can be a really scary place. We got into a couple of those forums that tend to be sort of doom and gloom and focus on all the negative things. It’s all the people that are struggling the most that seem to post in some of those forums.²⁷ (Type 1 diabetes, interview study)

Summary of findings

This systematic review and thematic synthesis revealed that parents developed a variety of strategies to obtain and appraise information and support online in the context of caring for long-term physical childhood conditions. These processes were based on their personal preferences, their search methods, the outcome of their appraisal of trustworthiness, the degree of their perceived need for information and support and previous positive experiences online. In most cases, parents reported going on to experience the benefits of accessing information and support online. This included the sense of community gained through connecting with others in a similar situation online, building relationships and trust and feeling reassured and validated, which was available from online support communities especially. Parents also reported feeling better informed about their children’s conditions, which helped them feel more in control in subsequent medical consultations and felt good about helping similar others by sharing their own experiences. However, some parents also emphasised the concerns and perceived risks of obtaining and using information and support online. These often stemmed from prior unsuccessful online experiences, having been told to avoid the internet by health professionals, and due to the fear of the distressing stories that they might come across online.

Findings in context of existing research

The findings from this study are largely consistent with other reviews that have explored peoples’ experiences with health information online,^{5 6} although these reviews had not focused specifically on the online experiences of parents of children with long-term physical conditions. However, our review uncovered more about the initial processes through which parents developed search strategies to obtain and evaluate health information and support online and the motivations behind these, which lead to the subsequent positive and negative experiences identified. Our review also drew more attention to the negative experiences that parents experienced online compared with these reviews,^{5 6} which could be due to the additional challenges of caring for a child rather than self-caring.

Collating and synthesising the experiences of parents of children with a variety of long-term conditions provided additional insights into parents’ experiences with the online world. Drawing on the different experiences discussed suggested that the potential harms of the online world were most apparent for parents of children with life-limiting conditions, or whose conditions were unstable (eg, cerebral palsy, cancer, type 1 diabetes, rare genetic conditions, gastro-oesophageal reflux disease). Concerns and perceived risks were not found in the papers focusing on eczema, asthma and other allergies and other disabilities. This suggests that parents of children with life-limiting or unstable conditions use information and support online with more caution.

This review was also able to further identify that the types of information and support sought by parents differed according to the stage and severity of their children’s conditions. The need for condition-related information was again more apparent across the papers that focused on the life-limiting or unstable conditions, whereas the need for peer support was apparent across all stages and severities (life-limiting, uncertain to stable and well managed). This suggests that parents’ need for condition-specific information comes first and is not needed in long term, whereas the need for peer support is continuous.

Strengths and limitations

This is the first systematic review to synthesise the existing qualitative literature exploring parents’ experiences of seeking health information and support online for long-term physical childhood conditions, providing new insights and developing the research field in this area.

A limitation to this study was that some of the included studies for synthesis also explored parents’ online experiences for conditions that are not long term and physical (eg, acute conditions, disabilities of learning, language and cognition, mental health conditions and health promotion in childhood), within the same paper. Some of the findings in these papers were not separated according to different conditions, therefore this review fails to identify possible differences between the online experiences of parents of children with long-term physical conditions and other types of conditions. However, this was never an aim of the study. Some included papers had limitations in reporting of methodological detail, for instance, sample size information. Additionally, included studies typically presented limited demographic data so it was not possible to explore how such factors may affect parents’ experiences in the online world. We also excluded quantitative studies which could have been used to support the qualitative findings, and did not search the grey literature which could have excluded some relevant studies. Finally, we analysed only the results sections of each paper, meaning that broader contextual factors that may have arisen in the discussion sections were not included although the discussion sections were read and checked in case.

Implications and future research

Improved understanding of parents’ experiences of seeking health information and support online for long-term physical childhood conditions may help health professionals treating these families. The findings from this study could be used to inform health professionals about parents’ experiences online: such as what they want from information and support online, why they choose online resources, what they are influenced by and the types of information and support that they access online.

Parents’ preferences and perceived benefits of online resources could be useful for future studies designing online resources for parents of children with long-term conditions. Specific examples that this study identified were online resources that contain medically moderated content, reminders to use online resources, frequently active members to reply to posts, easy to use and information tailored to the child’s condition and its severity. A future systematic review could collate which online resources for certain conditions are evidence based and meet the needs of parents, so that health professionals can signpost patients to such online resources.