TY - JOUR

T1 - How People With a Bipolar Disorder Diagnosis Talk About Personal Recovery in Peer Online Support Forums

T2 - Corpus Framework Analysis Using the POETIC Framework

AU - Jagfeld, Glorianna

AU - Lobban, Fiona

AU - Humphreys, Chloe

AU - Rayson, Paul

AU - Jones, Steven Huntley

PY - 2023/11/8

Y1 - 2023/11/8

N2 - Background Personal recovery is of particular value in bipolar disorder, where symptoms often persist despite treatment. We previously defined the POETIC (Purpose and Meaning, Optimism and Hope, Empowerment, Tensions, Identity, Connectedness) framework for personal recovery in bipolar disorder. So far, personal recovery has only been studied in researcher-constructed environments (eg, interviews and focus groups). Support forum posts can serve as a complementary naturalistic data resource to understand the lived experience of personal recovery. Objective This study aimed to answer the question “What can online support forum posts reveal about the experience of personal recovery in bipolar disorder in relation to the POETIC framework?” Methods By integrating natural language processing, corpus linguistics, and health research methods, this study analyzed public, bipolar disorder support forum posts relevant to the lived experience of personal recovery. By comparing 4462 personal recovery–relevant posts by 1982 users to 25,197 posts not relevant to personal recovery, we identified 130 significantly overused key lemmas. Key lemmas were coded according to the POETIC framework. Results Personal recovery–related discussions primarily focused on 3 domains: “Purpose and meaning” (particularly reproductive decisions and work), “Connectedness” (romantic relationships and social support), and “Empowerment” (self-management and personal responsibility). This study confirmed the validity of the POETIC framework to capture personal recovery experiences shared on the web and highlighted new aspects beyond previous studies using interviews and focus groups. Conclusions This study is the first to analyze naturalistic data on personal recovery in bipolar disorder. By indicating the key areas that people focus on in personal recovery when posting freely and the language they use, this study provides helpful starting points for formal and informal carers to understand the concerns of people diagnosed with a bipolar disorder and to consider how to best offer support.

AB - Background Personal recovery is of particular value in bipolar disorder, where symptoms often persist despite treatment. We previously defined the POETIC (Purpose and Meaning, Optimism and Hope, Empowerment, Tensions, Identity, Connectedness) framework for personal recovery in bipolar disorder. So far, personal recovery has only been studied in researcher-constructed environments (eg, interviews and focus groups). Support forum posts can serve as a complementary naturalistic data resource to understand the lived experience of personal recovery. Objective This study aimed to answer the question “What can online support forum posts reveal about the experience of personal recovery in bipolar disorder in relation to the POETIC framework?” Methods By integrating natural language processing, corpus linguistics, and health research methods, this study analyzed public, bipolar disorder support forum posts relevant to the lived experience of personal recovery. By comparing 4462 personal recovery–relevant posts by 1982 users to 25,197 posts not relevant to personal recovery, we identified 130 significantly overused key lemmas. Key lemmas were coded according to the POETIC framework. Results Personal recovery–related discussions primarily focused on 3 domains: “Purpose and meaning” (particularly reproductive decisions and work), “Connectedness” (romantic relationships and social support), and “Empowerment” (self-management and personal responsibility). This study confirmed the validity of the POETIC framework to capture personal recovery experiences shared on the web and highlighted new aspects beyond previous studies using interviews and focus groups. Conclusions This study is the first to analyze naturalistic data on personal recovery in bipolar disorder. By indicating the key areas that people focus on in personal recovery when posting freely and the language they use, this study provides helpful starting points for formal and informal carers to understand the concerns of people diagnosed with a bipolar disorder and to consider how to best offer support.

KW - Health Information Management

KW - Health Informatics

U2 - 10.2196/46544

DO - 10.2196/46544

M3 - Journal article

VL - 11

JO - JMIR Medical Informatics

JF - JMIR Medical Informatics

SN - 2291-9694

M1 - e46544

ER -