Summaries of the final 23 papers for thematic synthesis
| Authors of study (country) (ref.) | Aim(s) | Method of data collection (sample size) | Method of data analysis (as written by the authors) | Condition(s) |
| Alsem et al (The Netherlands)20 | To explore parental and physicians’' experiences with the WWW‐roadmap, as well as differences between parents who had used the WWW‐roadmap to prepare for a consultation with their rehabilitation physician and parents who had not, in terms of empowerment and self‐efficacy, parental and professional satisfaction with the consultation and family centredness of care. | Semistructured interviews (sample size not stated) | Theoretical thematic analysis | Disabilities: cerebral palsy, neuromuscular disorder, metabolic disorder, genetic disorder, spina bifida, various syndromes (eg, Down’s), movement disorder, unknown and other |
| *Included conditions that did not meet inclusion criteria. | ||||
| Benedicta et al (Australia)21 | To understand how parents search for and appraise the relevance and credibility of online health information regarding their child, and how they use this information in order to help them make better health decisions for their child. | Think aloud task of searching online health info and semistructured interviews (22) | Observation checklist for the think aloud task; inductive thematic analysis for the interviews | ‘Subacute’ conditions |
| *Potentially included conditions that did not meet inclusion criteria. Definition of ‘subacute’ not provided | ||||
| Canty et al (Canada)22 | To qualitatively and quantitatively assess the use of social media as an information-sharing and support-seeking tool by patients and caregivers. | Analysis of social media postings (sample size not stated) | Modified thematic analysis | Cerebral palsy |
| Gage-Bouchard et al (USA)23 | To examine the reasons paediatric cancer caregivers engage with cancer-related information on social networking sites and how caregivers appraise and assess the credibility of cancer-related information they encounter on this platform. | Semistructured interviews (40) | Thematic analysis | Cancer |
| Aston et al (UK)24 | To explore the treatment-related experiences when children and young people take regular prescribed medication. | Semistructured interviews (23 parents) | Thematic analysis | Inpatients taking two or more prescribed medications concurrently at home, prior to admission, for 6 weeks or longer |
| Names of conditions not provided | ||||
| *Possibly included conditions that did not meet inclusion criteria | ||||
| Hinton et al (UK)25 | To explore parents’ experiences and perspectives of having a baby who needs early abdominal surgery; identify the questions and problems that matter to parents during and after their pregnancy and infant’s surgery and identify the long-term impact on parents and families. | Interviews (starting unstructured then semistructured) (44) | Interpretative thematic analysis using a modified grounded theory approach, with constant comparison and exploration of deviant cases | Infants who needed abdominal surgery in the first year of life |
| *Included conditions that did not meet inclusion criteria | ||||
| Holtz et al (USA)26 | To develop a website resource, as an initial step in a larger intervention, for parents with a child with type 1 diabetes. | Focus groups (three parents), interviews (3) | Iterative thematic analysis | Type 1 diabetes |
| Perez et al (USA)27 | Stated as research questions: Research question 1: What types of uncertainty do parents of a child with type 1 diabetes report experiencing? Research question 2: How do parents manage this uncertainty? | In-depth interviews (29) | Thematic analysis | Type 1 diabetes |
| Wright (USA)28 | To qualitatively explore the informal learning experiences of members of an online social media group hosted by Facebook. | Semistructured interviews (25) and analyses of 604 postings (original and comments) created by members of the online social media | Several grounded theory methodologies | Gastro-oesophageal reflux disease |
| Rehman et al (Canada)29 | To establish the dominant themes of tweets posted by parents of children diagnosed with cancer and to situate the themes within a theoretical framework that describes the phenomenon of information sharing within a non-work context. | Analysis of the content of 1700 tweets from the Twitter accounts of 15 recruited participants | A deductive subjective interpretation | Cancer |
| Tracey et al (Australia)30 | To explore how parents acquire information to enhance their understanding of their child’s disability and individualised funding schemes. | Focus groups (56 parents, 13 groups) | A two stage, mixed method sequential approach which followed an initial survey | ‘Disability’ |
| *Possibly included conditions that did not meet inclusion criteria | ||||
| Alsem et al (The Netherlands)31 | To explore the experiences of Dutch parents of children with disabilities as regards their information needs, and to describe the process of seeking and evaluating information and the different sources of information. | Semistructured interviews (15) | Open coding thematic analysis | Cerebral palsy, gross motor function classification system 2–5, rare disorders (eg, genetic syndromes and metabolic and mitochondrial diseases) |
| *Possibly included conditions that did not meet inclusion criteria | ||||
| Kirk and Milnes (UK)32 | To explore how online peer support is used by young people and parents to support self‐care in relation to cystic fibrosis. | Analysis of discussion group postings (103) | Inductive grounded theory | Cystic fibrosis |
| Vogel et al (Canada)33 | To explore parental usage of the National Kidney Foundation website, track visitor behaviour, evaluate usability and design, establish ways to improve user experience and identify ways to redesign the website. | Mixed methods: Google analytic usage reports and focus groups (4) | Inductive content analysis and constant comparative approach | A condition requiring neurosurgery |
| Santer et al (UK)34 | To explore parents and carers’ experiences of searching for information about childhood eczema on the internet. | Semistructured interviews (31) | Content analysis and constant comparative approach | Eczema |
| Cargnin Pimentel et al (Brazil)35 | To describe the experience of patients with cystic fibrosis and their families using the internet as a means for information, interaction and exchange of experiences with this disease. | Questionnaire (7) | Content analysis | Cystic fibrosis |
| Nordfeldt et al (Sweden)36 | To explore parents’ views on their information seeking, internet use and social networking online, and to identify implications for the future development of internet use in this respect. | Focus groups (27) | Inductive qualitative content analysis | Type 1 diabetes |
| Gage and Panagakis (USA)37 | To examine how parents think about, evaluate, access and use the internet to seek information related to their child’s cancer. | Mixed methods: survey and structured interviews (41) | Grounded theory | Cancer |
| Gundersen (Norway)38 | To explore how the internet can function as a resource that parents can draw on to cope with their situation. | Semistructured interviews (10) | Not a specified method but looks like thematic analysis with comparative approach based on theorist | Rare genetic disorders that entail developmental and/or physical problems (eg, allergies and epilepsy, and two had severe physical and learning problems) |
| *Included conditions that did not meet inclusion criteria | ||||
| Stewart et al (Canada)39 | To gather parents’ preferences of support to design an innovative online peer support and test it. | Semistructured interviews (44) | Deductive thematic content analysis | Asthma and allergies |
| Nordfeldt et al (Sweden)40 | To explore patients’ and parents’ attitudes toward a local Web 2.0 Portal tailored to young patients with type 1 diabetes and their parents. | Essays (19) | Content analysis | Type 1 diabetes |
| Roche and Skinner (USA)41 | To describe how parents of a child referred for genetic services searched the internet for information, summarise how they interpreted and evaluated the information they obtained and identify barriers that they encountered. | Semistructured interviews (100) | Constant comparative method | Genetic |
| Nettleton et al (UK)42 | To explore parents and children’s experiences of using the internet for chronic childhood conditions. | Qualitative interviews (69) | Strategic comparisons approach | Eczema, asthma and diabetes |