This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.
Online ethnography has been making a unique contribution to people with chronic conditions as a complement to offline ethnography. It can also be used to study the complexities and contingencies of people with chronic conditions in the context of the internet. Therefore, there is a need to synthesize existing knowledge on research activities concerning online ethnography for people with chronic conditions.
This scoping review aimed to profile the existing evidence on the application of online ethnography for people with chronic conditions, focusing on the characteristics, contributions, and implementation process. This will provide recommendations for the future use of online ethnography.
We followed the scoping review methodologies developed by Arksey and O’ Malley and the Joanna Briggs Institute. A comprehensive search was conducted on the PubMed, CINAHL, Embase, Scopus, and PsycInfo databases using preselected keywords. The search was limited to documents written in English and published between January 1, 2000, and February 1, 2022. After removal of duplicates, articles were screened by 2 independent reviewers reading the title, abstract, and full text. One reviewer extracted data, which were descriptively analyzed to map the existing knowledge.
After 2836 titles and abstracts and 51 full texts were screened, 27 publications were included in the analysis, published between 2009 and 2022. Most studies were from the United States (11/27, 40.7%), and most articles collected data from online forums (10/27, 37.0%). Moreover, the most commonly used type of researcher involvement was passive analysis (24/27, 88.9%), and 18.5% (5/27) of the topics concerned people with mental illness. Notably, the majority of articles did not report the immersion process in detail (17/25, 63.0%). Ethical issues were mentioned in 88.9% (24/27) of the included articles.
We analyzed the current literature across fields and found that online ethnography can be exploited to explore the deeper experience of people with chronic conditions that are difficult to investigate using traditional ethnography. We found that there was diversity in researcher involvement, immersion process, data collection, and data analysis. However, most studies reported the insufficient immersion into the online environment. Researchers should determine the research approaches and data resources in order to complete culture immersion before researching. We also found that there was no uniform standard for ethical issues. Therefore, we recommend that researchers collect public and private data, obtain informed consent, and preserve the privacy and confidentiality of online users with chronic conditions. The findings can provide a practical reference for the use of online health care in studying chronic conditions.
There is an increasing number of patients with chronic conditions worldwide. The use of digital technology for these patients has become common due to advances in technology. People with chronic conditions include patients experiencing chronic physical pain, mental conditions, continuing conditions, chronic symptoms, or alcohol and substance abuse that normally last more than a year [
With the growth of online health communities and platforms, online ethnography has attracted more attention from health scholars, especial those who are interested in chronic diseases. Ethnography research is a qualitative methodology, which allows health professionals and researchers to study and generate a comprehensive understanding of social interaction, behavior, and perceptions that occur within groups, teams, and communities in the health care setting [
Although there is a growing number of online ethnography studies for people with chronic conditions, there is a lack of reviews synthesizing their common characteristics. In addition, the field of online ethnography is relatively young and thus lacks structures and guidelines, and so many studies are in the exploratory stage. Furthermore, there is limited data on the research specification and standards within a given type of online context and participant group. Consequently, there might be bias in the development of online ethnography. A review of the network ethnography in the field of chronic conditions can help understand research status, existing problems, and issues requiring attention concerning the new research method. Among the different types of reviews, scoping reviews yield a comprehensive review of a new research area [
We employed the scoping review framework by Arksey and O’ Malley [
The two main review questions were as follows: (1) What are the characteristics and contribution of online ethnography in people with chronic conditions? (2) How should ethnography be conducted for people with chronic conditions in an online environment?
Initially, a literature search was manually conducted in PubMed to identify chronic disease fields where online ethnography was mostly used and developed. We searched for the term “chronic disease” to identify relevant papers. However, the retrieved results were not comprehensive because of our consideration of “chronic conditions” instead of “chronic diseases.” Therefore, we decided to choose eligible articles from a wide range of articles and then searched in 5 electronic databases: PubMed, CINAHL, Embase, Scopus, and PsycInfo. The search strategy was as follows: (online* OR internet* OR cyber* OR web* OR digital OR online forum OR virtual community OR Facebook OR Twitter OR Instagram OR blog OR Youtube OR social media OR remote video OR visual) AND (nethnography OR ethnography OR netnography). The search included 2 sets of search terms: “online” or “ethnography.” To capture the evolution of online ethnography in people with chronic conditions over the years, the databases were searched between January 1, 2000, and February 1, 2022. An additional list of 2 relevant articles was manually searched to identify any other potentially relevant articles.
Here, we adopted the Joanna Briggs Institute’s population-concept-context framework to define our inclusion criteria. We included people with chronic conditions and searched for chronic diseases as a general concept as well as specific diseases including stroke, asthma, chronic obstructive pulmonary disease, cancer, and mental disease. We used any other relevant publications regardless of age, origin, or gender of the studied populations. The concept was use of ethnography while the context was online. We included full texts that reported the following contents: online ethnography being taken as a research purpose, collection of data with online ethnography, and analysis of data with online ethnography. This research included articles that were written in English; published between January 1, 2000, and February 1, 2022; and that evaluated online ethnography in people with chronic conditions. We excluded articles that were not directly related to our research review topic, such as those about dying patients and nursing robots. Gray literature and studies about nonhuman subjects were also excluded. In addition, we excluded articles which did not involve people with chronic conditions and those with no relevant information on online ethnography. A 2-step screening protocol was employed after duplicate removal. First, titles and abstracts were screened to determine the eligibility of each article. Full texts were then screened, and only articles that met the eligibility criteria were included. Two reviewers evaluated the articles using title and abstract analysis for relevance to online ethnography in people with chronic conditions. Full texts were retrieved and independently reviewed by 2 authors (WZ and QW) to confirm study eligibility. Consensus was reached through discussion and, where required, with consultation with a third author (LZ). One author (XC) conducted a supplementary hand search of reviews retrieved from the database search to identify additional studies to be included after consensus with the second author (YG).
A data extraction template was developed and independently piloted by 2 authors (YG and JL), which was then refined for the purposes of this review. Data were extracted from the included studies by 1 author (YG) and verified by the second author (XC). Information relating to authors, year, study design, country, target group, type of researcher involvement, data source, methods of immersion, data collection, data analysis, study purpose, results, ethical considerations, and limitations were extracted and tabulated using Microsoft Excel 2019 software. Moreover, the type of research was divided according to Keim-Malpass et al [
We performed a descriptive analysis of the included studies. The analysis included data on publication date, country of origin, type of population, and type of disease studied.
The electronic database search yielded a total of 2836 records. The selection process was summarized in the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram as shown in
Flow diagram showing included studies.
Although our research evaluated studies from 2000 to 2022, none of the 27 included articles were conducted before 2009. As shown in
The distribution of articles by the year of publication.
Year | Publications, n |
2009 | 1 |
2011 | 1 |
2012 | 1 |
2013 | 1 |
2014 | 1 |
2016 | 3 |
2017 | 2 |
2018 | 1 |
2019 | 5 |
2020 | 5 |
2021 | 5 |
2022 | 1 |
Distribution of publications by geographic location.
Geographic location | Publications, n |
American | 11 |
England | 8 |
France | 4 |
Brazil | 2 |
Austria | 1 |
Canada | 1 |
Currently, most of the used data were from second-generation online social media, which include discussion forums, blogs, and social networking sites [
Our analysis showed that the majority (24/27, 88.9%) of the included studies were passive analyses [
On the basis of the report of the National Health Council [
The distribution of articles by type of disease.
Disease | Publications, n |
Mental illness | 4 |
Female reproductive disease | 4 |
Neurological disorders | 4 |
Cancer | 4 |
Rheumatic immune system disease | 3 |
Diabetes | 3 |
Autoimmune disorders | 2 |
Hereditary disease | 1 |
HIV | 1 |
Thyroid disease | 1 |
We evaluated the effect of online ethnography on health information flow, emotional support, and interaction among patients with chronic conditions, peers, and health providers. We found the studies could be used to explore new modes of online medical practices, which include application of new medical technologies. With regard to study results, themes such as experience of self-management, experience of living with illness, and physician-patient relationship emerged (
Our findings showed that the majority (17/27, 63.0%) of articles among the included studies did not report the immersion process in detail [
Ethical issues were mentioned in the majority of articles. Only 11.1% (3/27) of the articles did not mention any issues on ethics [
Our findings demonstrated that online ethnography has great potential in the field of chronic disease research and has yielded beneficial outcomes in many chronic disease studies. This method has also attracted more attention from scholars in the field of chronic diseases
Online ethnography showed great contribution toward understanding how online users acquired health information, emotional support, and interaction with health providers, which provides thoughts on how to improve internet-based medical practices. First, the data showed that online users possibly sought health information and emotional support from peers instead of health care professionals. This could be because people tend to trust others who have similar challenges more than figures of authority from business, government, or mass media. However, there exists a controversy between the untrusted face-to-face patient-provider relationship and online support needs from health care professionals. Second, online ethnography can investigate the online health care pathways among chronically ill patients, which include individual and collective self-management and empowerment processes [
We also highlighted some characteristics and issues regarding the methodology and implementation process which should be dealt with. We identified online forums as the main data source, followed by Facebook, but the majority of the studies did not describe the immersion process. These data sources of online ethnography are broad and constantly evolving. Keim-Malpass et al [
We also highlighted 5 aspects of ethical issues and relevant limitations in the application processes of online ethnography for people with chronic conditions. First, the majority of our included studies were conducted using public data to avoid ethical controversy, which meant that individuals who had posted public messages did not have a reasonable expectation of privacy. However, such public data could lead to research bias, as passive patients with chronic conditions could have contrary opinions. Moreover, administrators of online communities sometimes would remove messages that were sad, shocking, or in violation of the group’s code of conduct, and, therefore, researchers could not capture a true and meaningful experience. Second, although it seemed justifiable to waive informed consent for observational research in a public space in the past [
The present study used a rigorous scoping review methodology based on the manual of the Joanna Briggs Institute. To ensure a broad search of the literature, the search strategy included 5 databases and employed the snowball technique. Although we highlighted significant findings, our scoping review process was limited by the fact that we might not have identified all relevant articles in the published literature despite attempts to be as comprehensive as possible. We also limited our review to documents written in English, which might have led to relevant studies being missed.
Our finding suggested that online ethnography has good potential for exploring the deeper experience of people with chronic conditions, which is difficult to investigate with traditional ethnography. These results provide practical guidance for the online health care of chronic diseases in a wide range of fields. Researchers should first determine the research type and map the online community. There was high heterogeneity in the immersion, data collection, and analysis. We therefore recognize that online ethnography is adaptable and without strict methodological limitations. However, the analyzed articles demonstrated insufficiency in the immersion process into the online environment. In addition, we observed that there is no uniform standard for ethical concerns. Therefore, we recommend preserving the privacy and confidentiality of online users.
Characteristics of included studies.
Open Artificial Pancreas System
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
World Health Organization
This work is supported by The National Natural Science Foundation of China (grant #71904196) and the Shanghai Pujiang Program (grant #2019PJC111).
YG and XC screened the title, abstract, and full-text of the identified studies. YG performed the data extraction. LZ performed the data verification. YG and XC drafted the manuscript. YG, XC, WZ, QY, and JL reviewed and approved the final manuscript.
None declared.