Background 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. Objective 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. Methods 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. Results 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. Conclusions 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.

Rationale, aims, and objectives: Chinese patients with advanced chronic kidney disease (CKD), especially rural patients possibly occur self-referral behavior and then treatment decisions followed. It is unclear the relationship between self-referral and treatment decision-making. Thus, the aim of this study was to explore the perceptions and views of self-referral and treatment decision making among patients with advanced chronic kidney disease. Methods: We conducted semi-structured interviews with 26 patients with advanced kidney disease and 12 nephrologists. Interviews were conducted and analyzed thematically until reaching thematic saturation. Results: We identified three themes reflected: 1) self-referral decision making (self-referral motive, barrier to self-referral, seeking for self-referral information); 2) the views and experience of self-referral care (facilitating shared decision making, imposing psychological pressure, feeling about self-referral communication, challenge to staff-patient relationship); 3) treatment decision making (decisional awareness and roles, cost-benefit trade-off and redicision). Conclusions: Our study identified that organizational and demographic factors, self-referral motives worked together at the self-referral decision-making and treatment decision-making when advanced CKD patients facing with healthcare facilities and treatment options. Those findings suggest stakeholders should accelerate the popularization of peritoneal dialysis technology and establish the CKD screening and management systems. For self-referral patients with advanced CKD, our results suggest specialized dialysis transition care to improve quality of communication and soothe patients’ negative emotion.

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.

Background: Chinese patients with advanced chronic kidney disease, especially rural patients possibly occur self-referral behavior and then treatment decisions followed. It is unclear the relationship between self-referral and treatment decision-making. Thus, the aim of this study was to explore HCPs and patient with advanced CKD perceptions of self-referral and treatment decision making. Methods: We conducted semi-structured interviews with 22 patients with advanced kidney disease and 8 health care professionals. Interviews were conducted and analyzed thematically until reaching thematic saturation. Results: We identified three themes reflected: 1) self-referral decision making (self-referral motive, barrier to self-referral, seeking for self-referral information); 2) the views and experience of self-referral care (facilitating shared decision making, imposing psychological pressure, feeling about self-referral communication, challenge to staff-patient relationship); 3) treatment decision making (decisional awareness and roles, cost-benefit trade-off and redicision). Conclusions: Our study identified that organizational and demographic factors, self-referral motives worked together at the self-referral decision-making and treatment decision-making when advanced CKD patients facing with healthcare facilities and treatment options. Those findings suggest stakeholders should accelerate the popularization of peritoneal dialysis technology and establish the CKD screening and management systems. For self-referral patients with advanced CKD, our results suggest specialized dialysis transition care to improve quality of communication and soothe patients’ negative emotion.