JMIR Publications

ABSTRACT

Background:

Unmet health and care needs in severe conditions are often intensified by delayed recognition and barriers to timely, appropriate care. Netnography, an adaptation of ethnography for online communities, offers a low-burden methods of examining how such needs are experienced and articulated in naturally occurring online interactions, including among populations facing stigma or complex care pathways. However, netnography is often inconsistently applied and ethical procedures are not always transparently reported. Furthermore, how this approach compares to other, more established methods is not well understood.

Objective:

To assess the feasibility of non-participatory netnography for identifying health and care needs of people in the United kingdom affected by advanced liver disease (ALD) and their caregivers, and to compare netnography-derived insights with a scoping review of recent UK-based literature.

Methods:

We conducted a non-participatory netnography of a UK-based ALD forum selected for relevance, sustained activity, and depth of discussion on care experiences. Posts and replies from May to September 2024 relating to health and care needs were analyzed using an iterative framework approach combining inductive and deductive coding. In parallel, we undertook a scoping review following JBIe guidance to identify UK-based studies published in English between January 2019 and October 2024 across major databases and selected grey literature sources. Findings from both methods were charted into a shared framework of needs domains to examine convergence and divergence. Ethical approval was obtained; administrator consent was secured; and privacy protections included removal of identifiers, minimal paraphrasing of quotations, and non-disclosure of the forum name.

Results:

For the netnography, 535 posts and 4,250 replies were identified, of which 155 posts/replies were relevant to ALD-related needs. Three primary domains were identified: medical, emotional and psychological, and financial. Forum users described unresolved symptoms; difficulties accessing timely appointments, procedures, and specialist support; diagnostic and prognostic uncertainty; limited dietary and self-management guidance; emotional distress; caregiver burden; alcohol-related stigma and relapse concerns; and financial strain related to employment disruption, benefits navigation, and, less commonly, seeking private care to bypass waiting times. The scoping review included 28 reports of 26 UK-based studies and corroborated many medical and emotional needs but reported comparatively fewer financial needs. It additionally highlighted behavioral/lifestyle regulation needs and selected social and cultural influences.

Conclusions:

Non-participatory netnography appears feasible for identifying a broad range of ALD-related health and care needs and provided complementary patient and caregiver-framed insights that both aligned with and extended the recent UK evidence base. Clinical Trial: NA