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Information Research - Vol. 29 No. 2 (2024)
Information Research, Vol. 29 No.2 (2024)
669
Contextual information needs of people in life
transitions struggling with
obsessive-compulsive disorder
Dawei Wu, Yuxiang (Chris) Zhao, Yan Zhang, and Shijie Song
DOI: https://doi.org/10.47989/ir292855
Abstract
Introduction. Obsessive-compulsive Disorder (OCD) is a severe chronic mental
health issue that significantly impacts people’s everyday lives. This study aims to
reveal the contextual information needs of the people living with OCD during life
transitions and how these needs dynamically evolve across various transitional
stages.
Method. The study collected 1,500 posts from an OCD online forum of a well-known
Chinese social media platform, Douban. A subsequent content analysis was
performed on 324 selected valid posts.
Analysis. Guiding by the information behaviour theory of transitions, two rounds of
open-coding analyses were conducted on the posts.
Results. Preliminary findings indicate that people with OCD have various types of
contextual information needs during different transitional stages, namely
understanding, negotiating, and resolving, suggested by the existing theory.
Conclusion. Information needs are context-specific, complex and continuously
changing during life transitions of people with OCD. Our conclusion can provide
theoretical insights for future research exploring the dynamic information needs
during the mental health transitions. Additionally, it serves as a preliminary
conceptual framework for various stakeholders to offer informational support to
people with OCD.
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670
Introduction
Life transitions denote the specific phases that
individuals grapple with, involving significant
events such as illnesses, traumatic incidents, or
bereavement (Ruthven, 2022). These transiting
periods, laden with life challenges, herald
disruptions to their daily routines and often
culminate in a loss of control and meaning. To
navigate this turmoil, individuals necessitate
appropriate information to assist them in
meaning-making (Park, 2010; Ruthven, 2019a).
In this ongoing study, we investigate the
contextual information needs of people with
obsessive-compulsive disorder (OCD) who
experienced life challenges. OCD, a prevalent
and chronic mental illness, manifests through
intrusive thoughts and ritualistic behaviours
(Mataix-Cols et al., 2005). Prolonged OCD
symptoms significantly impact patients' mental
well-being and social functioning (Stein et al.,
2019). Adequate informational support is
essential for people with OCD to understand
the nature of the illness and develop coping
strategies. However, people with OCD often
have a sense of shame associated with their
conditions which hamper their expression of
information needs and lead to information
poverty (Bronstein, 2014). Hence, it is critical to
explore the information needs of people with
OCD, in order to better provide them with
informational support during life transitions.
Furthermore, given that life transition is a
dynamic process, which can be divided into
multiple stages (Kralik et al., 2006), the
information needs for supporting transitions at
different stages are constantly changing
(Willson, 2019). Therefore, we are also
interested in how these needs evolve with the
progression of OCD transitions.
Building upon the above discussions, we have
proposed the following research questions:
RQ1: What are the contextual information
needs of people with OCD?
RQ2: How do the contextual information needs
evolve during different transitional stages?
Employing Ruthven (2022) 's information
behaviour theory of transitions, we conducted
a content analysis using data sourced from OCD
online forums in China. Our preliminary
findings dynamically illustrate the intricate
information needs of people with OCD across
various transitional stages.
Literature review
Ruthven posits, ‘Information behaviours we use
in everyday life may not be appropriate for
obtaining useful information during a
significant life change’ (Ruthven, 2022, p. 579).
Therefore, individuals need to adopt specific
information behaviours and practices to cope
with the complex challenges in a transitional
context. As the starting point of information
behaviour (Wilson, 1981), information needs in
transitional contexts exhibit complexity
(Savolainen, 2012; Wilson, 2019). These needs
are no longer about achieving the mastery of life
in everyday contexts but rather coping with
transitions in uncertainty and chaos
(Savolainen, 1995; Westbrook, 2009). For
instance, influenced by social stigma,
information sources for infertile men have
shifted from family and friends to online
infertility communities. Anonymous
communities better meet their private
information needs during their life transitions
(Patel et al., 2019).
In recent years, the Information Science field
has witnessed a surge in research exploring
information needs, behaviours, and practices
within various complex transitional contexts
(Haimson et al., 2021; Hicks, 2019; Ruthven et al.,
2018). For instance, studies have delved into the
information behaviour and practice among
immigrants (Allard and Caidi, 2018; Bronstein,
2019; Du, 2023), LGBTQIA+ individuals
(Huttunen and Kortelainen, 2021; Jia et al.,
2024), early career academics (Alon, 2023;
Willson, 2019), and refugees (Anderson et al.,
2020; Lloyd et al., 2017; Oduntan and Ruthven,
2019). Only a few studies have examined how
individuals with mental illnesses obtain
information support during transitions. For
example, Bao & Ke (2023) investigated the
information practices of individuals coping with
depression amidst the COVID-19 pandemic.
Genuis and Bronstein (2017) detailed how
people with OCD strive to establish a renewed
sense of normal by employing information
practices. However, these studies seldom
Information Research, Vol. 29 No.2 (2024)
671
systematically investigate the information
needs of individuals experiencing mental
distress during life transitions, particularly few
studies that specifically focus on the contextual
information needs of people with OCD.
Life transitions are a process during which
information needs and behaviours continuously
evolve (Ruthven, 2022). For example, Allard and
Caidi (2018) developed a five-stage translocal
meaning-making model, illustrating the
intricate information practices during
immigrant transitions. Naveh and Bronstein
(2019) analyzed forum data to examine how
information supports the construction of a
normal sense for diabetic pregnant women in
four stages. However, studies that depict the
dynamic information activities across multiple
stages of transitions remain scarce, possibly
due to the absence of transition theories within
the Information Science field. In recent years,
Ruthven (2022) proposed the information
behaviour theory of transitions as an
instrumental guideline to explore information
needs, behaviours, and practices during life
transitional stages. The core essence of this
theory categorizes transitions into three stages:
understanding, negotiating, and resolving,
following a chronological order. The general
pattern for each stage is as follows: during the
understanding stage, individuals engage in
information seeking from various information
sources, establishing preliminary
understandings of situations. During the
negotiating stage, individuals seek knowledge
to address the issue, evaluating its value and
engaging in information using behaviours. In
the resolving stage, individuals construct
meaning, develop new understandings of
transitions, and influence others by sharing
their narratives. Subsequently, this theory has
been adopted and expanded to some extent by
other scholars. For instance, Du (2023)
integrated this theory with the information
journey framework to investigate information
practices among older immigrants during life
transitions. Our research draws upon the
theory to examine how information needs
evolve across different transitional stages
among people with OCD.
Method
Data collection
Online forum data provides immediate, wide-
ranging insights into information needs
(Ruthven, 2019b). This study utilizes data from
'My Obsessive-Compulsive Disorder (OCD),' a
prominent Chinese online forum on Douban
(https://www.douban.com/group/43017/),
boasting over 60,000 members since 2007.
In order to conduct an initial exploratory study,
we employed a web scraping tool, Web Scraper,
to collect the latest 1500 forum posts. To
specifically capture information needs, we
selectively retained posts displaying evident
inquiry tones. 324 valid posts were selected for
subsequent data analysis.
Data analysis
This study uses content analysis to code data
concepts and themes. Initially, two doctoral
students independently applied open-coding to
extract research concepts and themes from the
data. Following this, two additional doctoral
students, not part of the initial coding,
collaborated in discussions to revise conflicting
codes. Finally, three information behaviour
experts, well-versed in the information
behaviour theory of transitions, participated in
a focus group discussion, contrasting coding
results with the theory's core stages and
providing interpretations on how information
needs themes emerge among people with OCD
across different transition stages.
Preliminary findings
Understanding: feeling, identity and
attribution
The understanding stage reflects the initial
stage for people with OCD, marked by a deep
sense of dissonance compared to their former
life. During this stage, information needs among
people with OCD are illustrated in Table 1.
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672
Information needs
theme
Concept
Description
Number &
Percentage
(%)
emotional
regulation
unhappiness
fear
tension
despair
irascibility
People with OCD have information
needs to methods of alleviate negative
emotions
74 (22.84%)
identity
confirmation
diagnosis confirmation
severity confirmation
People with OCD require informational
support to confirm their condition and
assess its severity.
15 (4.63%)
attribution
knowledge
familial reason
genetic reason
personality reason
cultural reason
People with OCD require informational
support to help them determine the
causes of their condition.
31 (13.25%)
Table 1. Contextual information needs during Understanding stage
Methods for emotional regulation stand as the
most pressing information need for people with
OCD at the understanding stage. However, it is
like what Taylor (1968) described as conscious
information needs—vague and challenging to
operationalize. Still, it may serve as an intrinsic
motivator for subsequent, more constructive
information needs. As illustrated in this
example:
‘This inexplicable fear—I'm a teacher, but why do
I feel this intense fear when I step onto the
podium? What's really going on here? Is it my
mind or is there something wrong with my body?’
Identity confirmation poses a challenge for
people with OCD. Due to insufficient mental
health education and a lack of policy guidance
in China, the term 'OCD' holds ambiguity and is
often treated with levity within Chinese culture,
many individuals are unaware that it is a
genuine mental health condition.
Consequently, in OCD forums, many people
seek validation regarding whether they truly
have OCD, for instance:
‘Does checking each question meticulously five
times or more count as OCD?’
Attribution knowledge is vital during the
understanding stage. Exploring OCD causes
helps individuals redirect focus and understand
subconscious connections with the disorder.
Consequently, people with OCD aim to
attribute the disorder to factors like family,
genetics, emotions, personality, and Chinese
ceremonial culture, leading to specific
information needs. For instance, in the family
context:
‘Do you feel your illness is related to your family
of origin? I believe it's my parents' excessive
protectiveness that reinforced my timid and
sensitive nature.’
Negotiating: Coping strategies and
social connections
During the negotiating stage, people with OCD
compare and weigh different treatment options,
aiming to address OCD in a way that aligns with
their personal psychological commitment while
minimizing costs. In this stage, information
needs among people with OCD are presented in
Table 2.
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673
Information needs
theme (Host's post)
Concept
Description
Number &
Percentage
(%)
coping strategies
medicine intervention
hospital intervention
psychological intervention
informal spiritual
information
treatment plan conflicts
People with OCD have numerous
information needs regarding
coping strategies for OCD.
78 (33.33%)
social connections
seeking geographical peers
seeking symptomatic peers
People with OCD seek to connect
with others who share
geographical or experiential
similarities.
102
(43.59%)
Table 2. Contextual information needs during Negotiating stage
Coping strategies for OCD become the primary
information need in this stage, with a
prominent focus on information regarding
medication as a treatment strategy. Apart from
information needs on drug use and efficacy,
people with OCD express information needs to
assist them in weighing options and risk-
reward scenarios during treatment, such as:
‘I want to stop medication for pregnancy
preparation, but I'm afraid of a relapse. What
should I do?’
In addition to the information needs related to
formal medical treatments, people with OCD
have informal spiritual information needs.
These spiritual insights assist people with OCD
in introspecting their inner selves and in
perceiving mental illness from 'higher' and
'deeper' spiritual dimensions (Nangia &
Ruthven, 2023), such as:
‘What are the core ideas of the ‘Shurangama
Sutra’? Why is it said to be capable of alleviating
anxiety?’
Building social connections enhances
community belonging and facilitates treatment
information exchange for people with OCD.
They strongly seek connections with nearby
peers and those with similar symptoms.
‘Are there any girls with OCD in Jiangsu? I hope
we can become friends.’
‘Is there anyone who likes adjusting volumes to
odd numbers?’
Resolving: can OCD achieve complete
recovery?
The characteristic of the resolving stage
involves individuals constructing a new
landscape of meaning, resolving or letting go of
long-standing issues (Ruthven, 2022). During
this stage, the information needs of people with
OCD are presented in Table 3.
Information Research, Vol. 29 No.2 (2024)
674
Information needs
theme (Host's post)
Concept
Description
Number &
Percentage
(%)
standards for
recovery
Correctness of recovery
direction
reduction of cognitive
echoes
elimination of physical
symptoms
People with OCD focus on recovery
details and aim for complete healing.
8 (2.47%)
coexistence plans
feasibility
efficacy
longevity
People with OCD seek viable
coexistence strategies with their
condition
16 (4.94%)
Table 3. Contextual information needs during Resolving stage
Information needs during the recovery phase
are minimal. First, people with OCD grapple
with the standards for recovery from the
disorder. They may seek confirmatory
information to evaluate how to return to a state
of no OCD. However, this obsessive insistence
on confirming information is not a positive sign,
as it is driven by the disorder itself. This could
exacerbate their condition, even leading them
back to previous stages. A post mentioned:
‘I feel like I don't have OCD, but I'm really
struggling with how to quickly alleviate the
symptoms of vegetative nerve disorder, and it's
really confusing me.’
Second, many people acknowledge the
difficulty of treating OCD, and mention a term
called living with anxiety. They no longer cling
to coping strategies but seek long-term
coexistence plans with the condition. For
instance:
‘I've come to accept reality; it's like a shadow I
can't shake off. I want to know how to coexist
peacefully with it.’
Discussion
This study, based on the information behaviour
theory of transitions, employed a qualitative
research method to explore the contextual
information needs of people with OCD. The
research illustrates the dynamic development
of information needs among them during
different stages of OCD transitions (see Figure
1).
Information Research, Vol. 29 No.2 (2024)
675
Figure 1. Contextual Information needs of people with OCD.
The preliminary findings of our study are as
follows:
During the understanding stage,
people with OCD have information
needs related to emotional regulation,
identity confirmation, and attribution
knowledge.
During the negotiating stage, people
with OCD seek information regarding
coping strategies for the condition and
maintaining social connections with
peers.
During the resolving stage, people
with OCD express information needs
about standards for recovery and
coexistence plans.
This study provides several theoretical
contributions. First, this study uncovered the
complex information needs of people with OCD,
offering a preliminary analysis of various needs
that build upon Bronstein (2014) 's initial
research on information poverty in this
population. Meanwhile, this study is among the
first to explore the information needs of OCD
population in an Eastern cultural context. Given
the differences in factors such as religious
beliefs and family norms between East and
West, the findings also exhibit some differences.
For example, unlike Bronstein's (2014) study,
this paper did not find information needs
related to economic or self-protection aspects
among OCD population but emphasized their
informal spiritual information needs, which
may be associated with the spiritual practices
advocated by Buddhism and Taoism unique to
Eastern context (Jeung et al., 2015). This
inspires future research to explore people with
OCD' information needs from a cross-cultural
perspective and through the lens of the
relationship between spirituality and physical
well-being.
Second, employed information behaviour
theory of transitions, we explored the
information needs at various transitional stages,
presented the dynamic evolution of
information needs. This aligns with Willson's
(2019) perspective on changing information
needs in the context of immigration transitions.
During the understanding stage, emotional
discomfort, identity ambiguity, and a desire for
understanding drive the information needs of
Information needs
of people with OCD
Negotiating
coping
strategies
social
connections
Understanding
emotional
regulation
identity
confirmation
attribution
knowledge
Resolving
standards for
recovery
coexistence
plans
Information Research, Vol. 29 No.2 (2024)
676
people with OCD, aligning with past
information behaviours related to emotional
fluctuations and identity construction during
the initial stages of transitions among
transgender transitions (Huttunen et al., 2020).
During the negotiating stage, people with OCD
start seeking specific treatment plans and
social connections, which parallels the
challenges in practices and community norms
experienced by LGBTQIA+ individuals in the
mid-stage as described by Jia et al. (2023).
During the resolving stage, the most prominent
information needs of people with OCD is the
pursuit of coexistesnce, as they seek to
embrace living in anxiety as a new way of life,
which is similar to the perspective of OCD
individuals seeking a new normal as highlighted
in the study by Genuis and Bronstein (2017).
Overall, our study provides valuable insights for
future exploration of multi-stage information
needs during transitions.
Finally, our study is an attempt to apply the
information behaviour theory of transitions to
the context of OCD. As a novel theory exploring
information activities in life transitions within
the Information Science field (Ruthven, 2022),
further expansion is needed for its application
and validation (Du, 2023). This study can serve
as a reference for future research on chronic
illness or mental health transitions that aim to
utilize this theory.
Our research also offers practical guidance for
a non-clinical approach, encouraging online
OCD communities, healthcare institutions, and
families to provide appropriate informational
support for people with OCD.
Limitations and Future Research
Our study has some limitations. First, it was
conducted within the context of China, lacking
cross-cultural data to compare the differences
in OCD information between Eastern and
Western cultures. Future research could
deepen understanding by examining data from
OCD forums in diverse cultural contexts.
Second, our study relies on secondary data
from forums, which means our interpretations
of information needs across different transition
stages are based on expert knowledge. In the
future, integrating primary data methods such
as interviews and interpretative
phenomenological analysis for more contextual
results are necessary. Finally, our study merely
presents the information needs of people with
OCD without delving into how fulfilling these
needs can assist them in meaning-making.
Future research could analyse responses in
forums to explore how meeting their diverse
information needs through information
practices at different transition stages could be
achieved.
Acknowledgement
The authors deeply grateful to the anonymous
reviewers whose insightful feedback has given
us confidence and assisted us in improving this
work! The study is funded by National Science
Foundation of China (No. 72374104).
About the authors
Dawei Wu is a Ph.D. student at the School of Economics and Management, Nanjing University of
Science and Technology. His research interests include human-information interaction,
Information seeking behaviour. He can be contacted at fyawdw@163.com.
Yuxiang (Chris) Zhao is a professor of School of Economics and Management, Nanjing University
of Science and Technology. Dr. Zhao’ research centers on interdisciplinary studies related to
human-computer interaction, health informatics, social impact of emerging technologies, open
innovation, and digital humanities. He can be contacted at yxzhao@vip.163.com.
Yan Zhang is a Ph.D. student at the Research Institute for Data Management& Innovation, Nanjing
University. Her research interests include human-computer interaction, Information behaviour.
She can be contacted at strawberries_z@163.com.
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Shijie Song is an assistant professor at the Department of Marketing, Business School of Hohai
University. His research focuses on information systems, human-computer interaction, and health
informatics. He can be contacted at ssong@hhu.edu.cn
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