Dataset Information

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:

Objective

To systematically review and synthesise qualitative research exploring parents/carers' experiences of seeking online information and support for long-term physical childhood conditions.

Design

Systematic review and thematic synthesis of qualitative research.

Data sources

Medline, 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 criteria

Primary 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.

Results

23 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.

Conclusion

Most 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 number

CRD42018096009.

SUBMITTER: Treadgold BM

PROVIDER: S-EPMC7772330 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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.

Treadgold Bethan Mair BM Teasdale Emma E Muller Ingrid I Roberts Amanda A Coulson Neil N Santer Miriam M

BMJ open 20201228 12

<h4>Objective</h4>To systematically review and synthesise qualitative research exploring parents/carers' experiences of seeking online information and support for long-term physical childhood conditions.<h4>Design</h4>Systematic review and thematic synthesis of qualitative research.<h4>Data sources</h4>Medline, 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.<h4>Eligi ...[more]

PMID: 33372077

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Project description:BackgroundParents commonly use the internet to search for information about their child's health-related symptoms and guide parental health-related decisions. Despite the impact of parental online health seeking on offline health behaviors, this area of research remains understudied. Previous literature has not adequately distinguished searched behaviors when searching for oneself or one`s child.ObjectiveThe purpose of this review is to examine prevalences and associated variables of parent-child online health information seeking; investigate parents' health-related online behavior regarding how they find, use, and evaluate information; and identify barriers and concerns that they experience during the search. Based on this analysis, we develop a conceptual model of potentially important variables of proxy online health information seeking, with a focus on building an agenda for further research.MethodsWe conducted a comprehensive systematic literature review of the PsycINFO, JMIR, and PubMed electronic databases. Studies between January 1994 and June 2018 were considered. The conceptual model was developed using an inductive mixed methods approach based on the investigated variables in the study sample.ResultsA total of 33 studies met the inclusion criteria. Findings suggest that parents worldwide are heavy online users of health-related information for their children across highly diverse circumstances. A total of 6 studies found high parental health anxiety, with prevalences ranging from 14% to 52%. Although parents reported wishing for more guidance from their pediatrician on how to find reliable information, they rarely discussed retrieved information from the web. The conceptual model of proxy online health information seeking includes 49 variables.ConclusionsThis systematic review identifies important gaps regarding the influence of health-related information on parents' health behavior and outcomes. Follow-up studies are required to offer parents guidance on how to use the web for health purposes in an effective way, as well as solutions to the multifaceted problems during or after online health information seeking for their child. The conceptual model with the number of studies in each model category listed highlights how previous studies have hardly considered relational variables between the parent and child. An agenda for future research is presented.

Project description:Background:In contemporary society, due to the exponential growth of technology and the online platform, data acquisition has never been so effortless. Subsequent accessibility to health information has been reported as having many positive and negative effects. Health anxiety is the apprehension of experiencing or developing an ailment due to symptomology misinterpretation. One such lifetime occurrence which causes increased anxiety is becoming a new parent. New parents often use the online platform to seek information which will educate them on how best to care for their child and to keep their child's health at the optimum level. Methods:The online Pregnancy Questionnaire used within this study was inclusive of the Short HAI Health Anxiety Inventory (HAI) and was tailored for both pregnant women and new parents. This study focuses specifically on the results provided by the new parents. The research was disseminated and advertised on social media platforms such as Facebook, Twitter and a purpose-built website named "A Healthy Search" which provided all information relevant to the study and participation. Quantitative data were analysed using a regression and qualitative data were thematically analysed. Results:Results shows that medical complications in pregnancy did not significantly predict health anxiety however medical care within the past year did. It can also be seen that frequency of searching online for self, did not significantly predict health anxiety, yet searching online for child did significantly predict health anxiety. Anxiety specific to pregnancy ceases when gravidity comes to an end and feelings of health anxiety then tend to be transferred from the mother (parent) to the child when one becomes a new parent. New parents strive to expand their own knowledge base, in regards to typical and atypical symptomology, so that they are better equipped to monitor development, care for, and make decisions on behalf of their child. The online platform was used as opposed to offline provisos due to inexperience, judgement and anonymity. Online health information seeking behaviour also has the probability of both increasing and decreasing levels of anxiety in new parents. Conclusions:This research recognised and reinforced positive and negative aspects of online health information seeking behaviour. It is recommended that further research be carried out into relevant, efficacious interventional techniques that may relieve health anxiety within new parents as contemporary technology has become a pivotal aspect of life.

Project description:ObjectiveTo understand poststroke fatigue from the perspective of stroke survivors and caregivers expressed in an online discussion forum.DesignThe search terms 'tiredness', 'fatigue', 'tired', 'weary' and 'weariness' were used to identify relevant posts. Thematic analysis performed by two independent researchers who coded all forum posts and identified pertinent themes. Posts were coded in relation to two research questions: (1) how is poststroke fatigue described? and (2) what coping strategies are suggested to target poststroke fatigue? Each theme was then summarised by a lead quotation in forum users' own words.SettingUK-based web forum hosted by Stroke Association, TalkStroke. Archives from 2004 to 2011 were accessed.Participants65 stroke survivors and caregivers (mean age 54 years, 61% female) contributed to 89 relevant posts that included a relevant search term. This included 38 stroke survivors, 23 individuals with family or carer role and 4 others unidentified.ResultsSix themes were generated: (1) medicalisation of poststroke fatigue: 'a classic poststroke symptom', (2) a tiredness unique to stroke: 'a legacy of stroke', (3) normalisation and acceptance of poststroke fatigue: 'part and parcel of stroke', (4) fighting the fatigue: 'an unwelcome guest', (5) survivors' and caregivers' biological explanations: 'the brain healing' and (6) coping mechanisms: 'pace yourself'. Forum users also repeatedly commented that poststroke fatigue was 'not understood by the profession'.ConclusionThis is the first study to employ data from an online forum to characterise poststroke fatigue. Our data are considered naturalistic owing to the absence of a researcher guiding the discussion and thus generates useful insights for healthcare professionals. Findings suggest a requirement for consistent understanding and explanation to be provided by healthcare professionals. The beliefs outlined here highlight the gap between clinical and community knowledge. Further research to translate understanding of patient and carer perspective into improved management of poststroke fatigue is required.

Dataset Information

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.

Objective

Design

Data sources

Eligibility criteria

Results

Conclusion

Prospero registration number

Publications

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.

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