Table 2.
Data extracted from the included articles.
| Author, year | Study design (N) | Location | Study objective | Study population | Main digital platforma (outcome measuredb) |
| Gundersen, 2011 [21] | Interviews (N=10) | Norway | Internet use for coping with chronic illness resulting from rare genetic disorders | Parents whose children have rare genetic disorders | 1, 2 (a, b, c, e) |
| Knapp et al, 2011 [17] | Survey (N=2371) | United States | Low-income parents of children with special needs access and use; factors related to internet use; parents’ eHealth literacy, and factors associated with higher eHealth literacy | Parents of children with special health care needs | 1, 2 (a, d, e) |
| Tozzi et al, 2013 [25] | Survey (N=516) | Italy | Details internet user profiles and how internet use affects decision-making | Patients of rare diseases | 1, 2 (a, c, e) |
| Johnston et al, 2013 [26] | Mixed methods: survey, (N=522), focus group (N=21) | Australia | How the internet can assist families with young disabled children to make effective intervention and support decisions | Families of young children with disabilities | 1, 2 (a, d, e) |
| Ahmed, 2014 [31] | Literature review (N=15) | Online | Summarize existing recommendations on internet use by parents of children with rare and difficult illnesses | Parents whose children have rare, difficult illnesses and special needs | 1, 2 (c, d) |
| Ammari et al, 2014 [29] | Mixed methods: interview (N=18), survey (N=205) | United States | Use of social media sites by parents of children with special needs for information and social support; perception and management of online and offline judgment; posts perceived to be socially appropriate to post on their own online profiles versus in shared online groups; how social media sites can better support special needs families | Parents of children with special needs | 1 (a, c, d) |
| Al-Daihani and Al-Ateeqi, 2015 [22] | Survey (N=240) | Kuwait | Information seeking behavior of parents of children with disabilities | Parents of children in a school for special needs | 1, 2 (a, c, e) |
| Ammari and Schoenebeck, 2015 [20] | Semistructured interviews (N=43) | Online | The use of social media needs by parents with special needs children | Parents of children with special needs | 1 (a, c, e) |
| Russell et al, 2016 [23] | Quantitative assessment of Facebook likes and posts; survey (N=49) | Canada, United Kingdom, Australia | Development and evaluation of web-based research advisory community that links parents to researchers to improve research and affected families/children’s lives | Parents of children with special needs who used a Facebook group | 1 (a, b, c, d) |
| DeHoff et al, 2016 [30] | Scoping review (N=N/Ac), expert interviews (N=N/A) | Online | Status of research on the usefulness of digital communication like social media, in providing informational and emotional support | Parents of young children with special health care needs | 1, 2 (a, b, c, e) |
| Fostervold, 2016 [16] | Case study (N=1) | United States | How social media posts support parents in raising their children with a disability | Parents of a child with a disability | 1 (a) |
| Alsem et al, 2017 [18] | Semi-structured interviews (15) | Netherlands | Information needs, process of seeking and evaluating information, and the different sources of information for parents | Parents of children with disabilities | 1, 2 (a, b) |
| Nicholl et al, 2017 [27] | Mixed methods: survey (N=128), focus group, (N=8) | Ireland, Northern Ireland, United States, United Kingdom | General internet usage patterns, types of information frequently searched for, and effect of internet-sourced information on parents of children with rare conditions | Parents of children with rare conditions | 1, 2 (a, b, d) |
| Sharaievska and Burk, 2018 [19] | Semistructured interviews (N=8) | United States | Role of online and offline support groups in the lives of families with children who have developmental disabilities | Married mothers who had 1-5 children with developmental disabilities | 1 (a, e) |
| Rocha et al, 2018 [24] | Survey (N=103) | Online | Understand the online behavior, perspectives, and norms of rare disease communities to provide preliminary guidance to genetic counselors who wish to have discussions about social media support resources | Patients with newly described or rare genetic findings from online patient registries | 1 (a, c, d) |
| Tracey et al, 2018 [28] | Mixed methods: survey (N=291), focus group (N=56) | Australia | Information-seeking behavior of parents and their perceptions and evaluations of the various information sources available | Parents of children with disabilities | 1, 2 (a, b, c, d, e) |
| Terra, 2020 [15] | Semistructured and open-ended interviews (N=5) | United States | Role of social media to empower and provide community for parents raising children with profound multiple disabilities | Parents of children with profound multiple disabilities | 1 (a, c) |
aDigital platforms: (1) social media (eg, Facebook, Twitter, email), (2) internet search engines, health apps, medical websites, or not specifically mentioned otherwise.
bOutcome measured: (a) reasons for use, (b) expectations from use, (c) concerns/shortcomings, (d) suggestions for improvement, (e) satisfaction and experience.
cN/A: not available.