JMIR Publications

ABSTRACT

Background:

Online ethnography is making a unique contribution to people with chronic condition as a complement to offline ethnography. Besides, it is particularly well-suited to studying the complexities and contingencies of people with chronic condition in online culture. Consequently, there is a need to synthesize existing knowledge on research activities for online ethnography for people with chronic condition.

Objective:

This scoping review aimed to provide a map of existing evidence on online ethnography for people with chronic condition, focusing on the characteristics, contributions and implementation process and provide recommendations for the use of online ethnography in the future.

Methods:

We followed the scoping review methodologies developed by Arksey and O’ Malley and the Joanna Briggs Institute. After developing search strategies based on keywords, comprehensive searches were conducted in the PubMed, CINAHL，Embase, Scopus, PsycInfo database. We limited the search strategies to documents written in English and published January 1, 2000, and February 1, 2022. After removing duplicates, articles were screened at the title and abstract level and at the full text level by two independent reviewers. On reviewer extracted data, which were descriptively analyzed to map the existed knowledge.

Results:

After screening 2836 titles and abstracts and 51 full texts, 25 publications were included, dating from 2009 to 2022. Studies mainly came from America (9/25, 36.0 %), most articles were from online forum (10/25, 40.0 %), majority of included were passive observation (19/25, 76.0 %), 20% of topics were people with mental illness (5/25). Meanwhile, majority of articles did not report immersion process in detail (16/25, 64.0 %), 36.0 % accepted the institutional review board approval (9/36).

Conclusions:

Through analysis of the current literature across fields, we were able to demonstrate that online ethnography has high potential to explore deeper experience of people with chronic conditions that not easy to be investigated using traditional ethnography. The results can provide practical guidance for online healthcare for chronic diseases in a large range of fields. Researchers should determine the research type and map online community primarily. Although large heterogeneity of the immersion, data interpretation and analysis were noted, the immersion process in the online environment is insufficient. Additionally, we have observed there is no uniform standard for ethical issues. We therefore recommend preserving privacy and confidentiality of online users.