University of Southern Denmark

Information seeking for coping with cancer

A systematic review
Petersen, Emil; Jensen, Jesper Gabs; Frandsen, Tove Faber

Published in:
Aslib Journal of Information Management

DOI:
10.1108/AJIM-01-2021-0004

Publication date:
2021

Document version:
Accepted manuscript

Citation for pulished version (APA):

Petersen, E., Jensen, J. G., & Frandsen, T. F. (2021). Information seeking for coping with cancer: A systematic
review. Aslib Journal of Information Management, 73(6), 885-903. https://doi.org/10.1108/AJIM-01-2021-0004

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Information seeking for coping with cancer: a systematic
review
Emil Petersen
University of Southern Denmark, Department of Design and Communication, Universitetsparken 1,
DK-6000 Kolding, Denmark
Jesper Gabs Jensen
University of Southern Denmark, Department of Design and Communication, Universitetsparken 1,
DK-6000 Kolding, Denmark
Tove Faber Frandsen
University of Southern Denmark, Department of Design and Communication, Universitetsparken 1,
DK-6000 Kolding, Denmark
Corresponding author: Tove Faber Frandsen
[email protected]

Abstract
Purpose: Information seeking can be used to make sense of a situation or solve a problem. Information
seeking can be considered a coping strategy when facing illness, crisis or other lifechanging events.
Cancer is a globally occurring, life-threatening disease and this review aims to provide an overview of
the existing literature on the active information seeking behaviour of cancer patients specifically
focusing on how active information seeking serve as a coping-strategy.

Methods: This study adheres to current guidelines for conducting systematic reviews and consequently,
thorough literature searches were conducted in four databases: Medline, Embase, CINAHL and Scopus
which resulted in 7,179 publications. Following a careful screening process, this systematic review
identifies 14 studies on the use of information seeking to cope with cancer.

Results: The included studies consist of both qualitative as well as quantitative approaches to analysing
the use of information seeking to cope with cancer. The included studies have focused primarily on
demographic factors, the impact of affect, information needs, sources and coping strategies.

Research implications: Several research gaps within library and information science are identified.
Bringing research in this field into information science could allow for a greater understanding of
information literacy, the use of existing information and the process of information searching when
using information seeking to cope with serious illness.

Originality: This systematic review focus on how information seeking serve as a coping-strategy for
cancer patients and provides an overview of the recent literature.

1
Introduction
Information seeking behaviour during lifechanging events has received great attention within the field
of information behaviour including the information needs and seeking behaviours of refugees (Hassan
and Wolfram 2020), concerned working students during a haze crisis (Pang 2014) and during extreme
weather (Silver and Andrey 2019). Health information seeking behaviour is an area where the
information an individual finds impact their lifestyle and health behaviours in both long and short
terms (Zhang 2012). The interest in health information seeking behaviour is shared with various health
sciences although both fields draw heavily on models developed in information science (e.g. Clarke et al.
2016, Persakis and Kostagiolas 2020).

Information seeking is essential for effective patient-centered decision-making (Chhatre et al. 2020) and
enables better health outcomes (Katavic et al. 2016, Kostagiolas et al. 2020). Information seeking is
widely used by patients (Ebel et al. 2017). Paige et al. (2020) argue that information seeking is an active
health behaviour which influences illness fatalism. Faller et al. (2016) and Persakis and Kostagiolas
(2020) link information seeking to long term outcomes of patients and argue that fulfilling unmet
information needs can increase the patients’ sense of control which improves health-related quality of
life as well as optimising their health care. According to Zimmerman and Shaw (2020) health
information seeking behaviour is a complex concept that addresses health promotion as well as the
psychological state of dealing with or being diagnosed with a medical condition. Lambert and Loiselle
(2007) provides an overview of the concept of health information-seeking behaviour and reviews 100+
publications. Paimre (2018) concludes that mixed methods seem to have generated the most
comprehensive approach for studying online health information seeking behaviour in all its variety and
complexity.

Health information seeking behaviour is often disease or illness oriented whereas seeking wellness
information seems to be a unique behaviour among health-conscious individuals (Weaver et al. 2010).
Studies on health information seeking behaviour often focus on cancer patients (e.g. Christalle et al.
2019, Chang and Huang 2020, Pian et al. 2020). Cancer is a globally occurring, life-threatening disease
and the patients are under great stress (Pitman et al. 2018, Harrison et al. 2009, Armes et al. 2009).
Studies on information seeking behaviour of cancer patient is available in plenty and various aspects
have been explored. Recent examples include exploring the information need of cancer patients
(Zimmermann et al. 2020), the decision for cancer patients to engage in information seeking (McDowell
and Pachur 2020), and the information-seeking behaviours and resource preferences for caregivers of
cancer patients (Chua et al. 2020b).

Patients have access to health-related information in abundancy and it can be difficult to navigate the
vast amount of information (Perrault et al. 2020, Chua et al. 2020a). The amount of information may
even cause information overload which is defined as the feeling of not being able to process the large
amount of information faced by a person (Swar et al. 2017). A specific type of overload is even defined
for cancer as cancer is heavily researched and the available information is thus increasing at a very high

2
rate (Jensen et al. 2014, Jensen et al. 2020). For a recent review of the literature on information overload
the reader is referred to (Khaleel et al. 2020). Information overload can cause information avoidance i.e.
a person not wanting to get information; however, avoiding cancer-related information may have
severe impacts on public health (Chae 2016). Consequently, solutions have been put forward to reduce
the risk of overload (e.g. Serçekuş et al. 2020).

Cancer-patients engage in health information seeking activities to satisfy many different needs. Rutten et
al. (2005) define 10 need categories with 64 subcategories as a classification scheme for information
needs. They describe the following information needs: cancer-specific, treatment related, prognosis,
rehabilitation, surveillance and health, coping, interpersonal/social, financial/legal, medical system and
body image/sexuality information. One of these special cases, information seeking as means to cope
with illness, is described by Rutten et al. (2005) as emotional reactions, emotional support, community
counselling or support, support groups, support from other patients and spiritual support. Information
seeking as means to cope with illness has received considerable attention in the existing literature:
Zimmerman and Shaw (2020) argue that information seeking can be means to cope in health
threatening situations. Recent studies cover diabetes (Lee et al. 2020), dementia (Soong et al. 2020) and
rare disease patients (Stanarević Katavić 2019). Savolainen (2006) argues that a person can try to find
more information to make sense of a situation or solve a problem, and if a problem requires immediate
attention, the concern or interest turns into caring. Savolainen (2006, p. 115) describes caring as “a
temporally sensitive context of information seeking in that the person engages in action in order to
change or control the worrisome matters”. Lambert and Loiselle (2007, p. 1006) argue that “seeking
information about one's health is increasingly documented as a key coping strategy in health-promotive
activities and psychosocial adjustment to illness”. Consequently, information seeking for coping with
cancer can be characterised as a special case of information seeking where cancer patients seek coping
information.

Information seeking as coping has been addressed in existing reviews. It is covered in the systematic
review by Rutten et al. (2005) among other types of information needs of cancer patients. Since the
publication of the review by Rutten et al. in 2005 the growing publication outlets within this area have
resulted in recent reviews having narrower defined topics. The population can be defined more
narrowly, e.g. patients with skin cancer (Bath-Hextall et al. 2017) or breast cancer (Lu et al. 2020).
Alternatively, the information behaviour of interest can be further limited, e.g. information behaviour
regarding the use of complementary and alternative medicine (Stub et al. 2020) or information needs
regarding treatment-focused genomic testing (Wolyniec et al. 2020). However, since the review by
Rutten et al. (2005) no reviews have focused on reviewing the studies specifically addressing the use of
information seeking by cancer patients as coping.

The purpose of the present study is consequently to draw attention to the use of information seeking to
cope with life-threatening illness and the aim of this study is to review the existing literature on the use
of information seeking by cancer patients as coping.

3
Methods
Our systematic literature review adheres to current guidelines for conducting systematic reviews (Shea
et al. 2007). Furthermore, it follows the Preferred Reporting Items for Systematic Reviews and Meta-
analysis (PRISMA) statement (Moher et al. 2009).

A pivotal step in the planning of a systematic review is to define the review question and type of
review. Review foci need to be conceptualised and phrased into review questions as the well-formed
review question has a direct impact on the conduct of a systematic review (Thoma and Eaves 2016).
The review question can be formulated using a conceptualisation model which contributes to
structuring and defining the question (Munn et al. 2018). In health sciences, the PICO framework is
often used to define the review question, determine the eligibility criteria, and plan the searches. The
PICO framework was developed to assist in the formulation of the focused and well-articulated
healthcare-related question consisting of four parts: the patient or problem; the intervention or
exposure; the comparison intervention or exposure, if relevant; and the clinical outcome of interest
(Richardson et al. 1995, Miller and Forrest 2001). The PICO framework is used frequently, however,
other conceptual frameworks have been developed that are better suited for specific review types
(Munn et al. 2018). There is little empirical data on the effectiveness of these models (Eriksen and
Frandsen 2018) and it is recommended to let the question structure match the purpose and focus of the
review (Booth 2016).

Within library and information science similar frameworks have been developed. Drawing on the work
by Stansfield (2018), Stapleton et al. (2020) recommends the following steps in the development of the
search strategy: i) isolate main concepts of research question, ii) search term development, and iii)
search strategy construction. For this review we consider the following main concepts: cancer patients,
information seeking and coping. Studies exploring the use of information seeking as the only coping
strategy or in combination with other strategies are all eligible.

Cancer patients: Studies concerned with current or former cancer patients regardless of gender are
eligible. Consequently, studies concerned with cured cancer patients are included as long as the study
explore their period of illness. Studies that express that cancer is the primary reason for coping and / or
seeking information are eligible. Studies focusing mainly on coping with other stress factors, e.g.
financial stress etc., are excluded, unless cancer-related stress is also considered. Included studies must
base their data on adult cancer patients (18 years and older), as this study considers the population
subjects that act on their own agencies, without (at least major) influence from e.g. guardians.

Information seeking: We are interested in the information behaviour of cancer patients as means of
coping with the serious illness and more specifically, studies that explore information seeking behaviour
is eligible in this review. When defining information seeking we follow the definition by Berget and

4
MacFarlane (2020) using Wilson (1999) to describe information seeking as a subset of information
behaviour focusing on the different methods people use to find and gain access to information sources.
Furthermore, information searching is a subset of information seeking focusing on the interactions
between computer-based information systems and users. To define the information behaviour eligible
in this review we also need to consider whether the cancer patients are actively seeking information.
Based on two variables, Bates (2002) described information seeking and searching as active or passive
as well as directed or undirected. For the purpose of this review, we include studies focusing on active
behaviour. Consequently, we include studies exploring active and directed information behaviour
(Bates refers to this as searching) as well as the active and undirected information behaviour (Bates
refers to this as browsing). Thus, we exclude studies focusing on what Bates termed monitoring and
being aware.

Coping: Studies are eligible if they explore the extent to which information seeking is serving as coping
(or not) by cancer patients and what information seeking means to cancer patients. If a study explores
stress relief, distraction, or simply an action that helps individuals deal with stress (both for better or
worse) caused by information seeking, we identify this as coping. Studies that provide a nuanced
picture of how patients experience information seeking during their illness are also eligible.
Furthermore, we include studies exploring potential opt-out of information seeking.

According to Stansfield (2018) the next step in the systematic search process is search term
development and search strategy construction. To retrieve all studies of cancer patients engaging in
information seeking we define information seeking broadly using terms that are derived from the
research field (including information seeking, behaviour, need, searching, sources, locating, retrieving
and obtaining). Furthermore, cancer patients as well as coping are also defined broadly. A full list of
search terms are available as supplementary material (link: xxxx).We combine all the search terms into
one search strategy using the approach recommended by Stapleton et al. (2020). The literature is
retrieved using four databases: Medline, CINAHL, Scopus and Embase. The literature search was
conducted using both free text and subject headings as recommended in current guidelines (McGowan
et al. 2016, Stapleton et al. 2020). The searches were conducted during February 2020. The search is
limited to literature published after 1999 as information seeking has changed dramatically with the
widespread usage of the Internet (Zimmerman and Shaw 2020). All study designs and publication types
were eligible and therefore no limitations were used for study design and publication type. Finally, the
literature search was limited to literature in English as assistance with translation and data extraction
from non-English language reports of studies was not available. The database search histories are
available as supplementary material (link: xxxx). The traditional database searches for a systematic
review can be supplemented with citation searches to use the citation network surrounding a source
study to identify relevant studies (Briscoe et al. 2019). Citation searches were performed in Scopus for
each of the included publications on 19 March 2020. The search histories of the citation searches are
also available in supplementary material (link: xxxx).

5
We follow the recommendation that the screening process should take place in two phases (Booth et al.
2016): first, screening of title and abstract of the articles and secondly, full text reading. Covidence is
software developed for screening of literature for systematic reviews (Cleo et al. 2019) and we used this
for the screening of titles and abstracts as well as the full text of the papers. Conflicts were resolved by
consensus. The agreement on judgements also known as “interrater reliability” is commonly measured
using two measures: percent agreement and Cohen’s kappa (McHugh 2012). In this study those two
measures of interrater reliability are used. For transparency the list of excluded studies is available in
supplementary material (link: xxxx).

Data extraction took place using a data extraction form, which provides a clear overview of each article
and its’ characteristics (Booth et al. 2016). The data extraction template describes the following
characteristics of the studies: Study design, study subject, aim of study, population description, setting,
method of recruitment, participant age, sex, findings, conclusion, ethical standards and data analysis.
The template was pilot tested. Data extraction tables are available in supplementary material (link:
xxxx).

The included studies are explored in a thematic synthesis, which allows for identification of a number
of common factors that are important for understanding a particular phenomenon (Booth et al. 2016).

Results
The literature searches resulted in a total of 7,179 references. After removing duplicates 5,491
publications were screened based on title and abstract. After the first screening there were 268 conflicts
and the interrater-reliability is thus 95% agreement (Cohen’s kappa is 0.21). The conflicts were resolved
by consensus after discussion and 82 articles were read in full text. This screening process resulted in 33
conflicts and the interrater-reliability is thus 60% agreement (Cohen’s kappa is 0.07). Due to the
relatively low interrater-reliability the full text review of articles led to thorough discussions. Finally, 14
studies were identified that met the inclusion criteria. This process is illustrated in figure 1. Finally, the
included studies formed the basis of a citation search and in total 188 citations were identified. A
screening of these did not result in further included studies.

6
Figure 1. Study selection flow diagram.

Records identified through database

searching

Scopus = 1,846
Embase =2,813
Medline = 1,170
CINAHL = 1,350

Records after duplicates removed

(n = 5,492)

Records screened Records excluded

(n = 5,492) (n = 5,410)

Full-text articles assessed for Full-text articles excluded,

eligibility with reasons
(n = 82) (n =68)

Studies included in
qualitative synthesis
(n = 14)

First, we will provide a brief description of the characteristics of the included studies. The studies
include from 16 to 6,369 participants. The methods consist of six quantitative studies (Beckjord et al.
2008, Baumann et al. 2017, Beekers et al. 2015, Bennenbroek et al. 2002, Bennett et al. 2009, Ebel et al.
2017), seven qualitative studies (Ben-Tovim et al. 2002, Blödt et al. 2018, Gibbons and Groarke 2018,
Kazer et al. 2011, Leydon et al. 2000, Lie et al. 2018, Miller 2014) and one mixed methods study
(Bootsma et al. 2020).

The quantitative studies focus on the impact of affect, mental health and well-being on information
seeking behaviour (Beckjord et al. 2008, Beekers et al. 2015, Bennenbroek et al. 2002). Furthermore, the
quantitative studies explore the impact of demographic characteristics on health information seeking
behaviour (Baumann et al. 2017, Bennett et al. 2009, Ebel et al. 2017). The qualitative studies explore

7
coping strategies and information seeking used as one out of many coping strategies (Ben-Tovim et al.
2002, Gibbons and Groarke 2018, Leydon et al. 2000, Miller 2014, Blödt et al. 2018). The qualitative
studies also address age and gender-specific information behaviour (Kazer et al. 2011, Lie et al. 2018,
Gibbons and Groarke 2018). Finally, the mixed methods study explore information needs (Bootsma et
al. 2020).

An overview of the included studies and their characteristics is available in table 1.

8
Table 1 provides an overview of the included articles.

Study Field of study Method Participants Results

Baumann et al. To identify gender-specific Quantitative: survey 1,219 participants. Germany. Age and degree of satisfaction with one’s general
(2017) determinants and patterns of Female: 610 practitioner were gender-specific determinants of
Online health information- Male: 609. access to OHISB. Regarding the frequency of
seeking behaviour (OHISB) Age range: 18-79 years. OHISB, daily Internet use and a strong interest in
Participants ranged from chronically or health topics were revealed to be more important
severely ill, to mild illness or not affected. predictors than socioeconomic status.

Beckjord et al. Health communication can help Quantitative study: a 5,589 participants. Increased cancer worry was associated with more
(2008) to reduce the cancer burden by nationally representative USA based. attention to health information and worse cancer
increasing of information survey Female: 3,305. information-seeking experiences. Increased
processing of health Male: 2,284. symptoms of depression were associated with
interventions. Adults 18 years +. worse information-seeking experiences, but not
with attention.

Beekers et al. To examine if anxious and Quantitative study. survey Participants: 3,080 cancer survivors. Anxious or depressive symptoms were negatively
(2015) depressive symptoms are Based in the Netherlands. associated with experienced helpfulness of
associated with satisfaction with Participants were diagnosed with either received information. Having depressive
information provision and cancer endometrial cancer, colorectal cancer, symptoms or both depressive and anxious
survivors’ Internet use. lymphoma or multiple myeloma, prior to symptoms were negatively associated with
their recovery. satisfaction of information.

Ben-Tovim et The study aims to determine Qualitative study: 80 prostate cancer patients (all male). Factor analysis revealed that coping can be
al. (2002) whether there is an underlying interviews. Age ranged from 50 to 85 years. described along five dimensions: positive problem
structure to the various coping Australia solving, self-reliance, emotional availability,
strategies used by patients with distress and solace. These coping styles were
prostate cancer. correlated with age, quality of life, self-reported
prostate-specific antigen level, and measures of
anxiety and depression.

Bennenbroek et The study focuses on social Quantitative study: 60 cancer survivors. Ages range between The need for comparison is especially present
al. (2002) comparison processes among questionnaire 30 to 82 years. among those who view their own health

9
 cancer patients. Based in the Netherlands. negatively. Patients are interested in information
Female: 75% about others who are coping better than
Male: 25% themselves.

Bennett et al. To describe the differences Quantitative: questionnaire 836 cancer survivors. Younger survivors were more likely to seek
(2009) between younger and older Based in New Zealand. information from sources beyond their physicians
cancer survivors in seeking cancer 18 years or older. and used different sources for that information,
information. Age ranged from 23 to 89 years. compared to older survivors.

Blödt et al. Focus on information needs, as A secondary analysis of data 127 participants, The significance and role of the information in
(2018) well as information as a tool for from a qualitative interview Germany the course of the disease was clearly associated
coping study including narrative 18 years or older. with gaining control in a seemingly uncontrollable
interviews. A thematic Age ranged between 25-78 years. situation. Information helped patients regain a
analysis was conducted, Female: 65. sense of control after a cancer diagnosis. There
followed by an in-depth Male: 62. was always a fine line between seeking
analysis. Current cancer patients, with either information and being overwhelmed by
prostate, breast or colorectal cancer. information.

Bootsma et al. Explores the information needs Mixed method study Survey: 77 male breast cancer survivors, Unmet information between patients and health
(2020) of male cancer patients and lack (interviews, survey, focus patient advocates and partners. professionals were identified. Information on men
of information group) Focus groups: 12 patients and 2 partners with breast cancer should be improved for a
Based in the Netherlands. timely diagnosis, quality of life, treatment, and
Age ranged from 44 to 89 years. survival. A website is deemed an ideal tool to
meet the needs of the target group.

Ebel et al. To reevaluate the Internet use Quantitative study: 255 cancer patients attending a series of The number of patients searching the Internet for
(2017) among German cancer patients. anonymous survey lectures on complementary medicine information is increasing. They search mostly to
Based in Germany. find additional information. The quality of
Female: 156. information, though, is heterogeneous, false and
Male: 92. may lead to distrust in the physician or false
Mean age: 63.5 years. decision making.

Gibbons and Exploring coping strategies that Qualitative, semi-structured 20 participants, A combination of coping strategies was used to
Groarke (2018) women use to tackle the side face-to-face interviews Based in the UK deal with the side effects of chemotherapy.
effects and disorders of Female breast cancer survivors. Coping strategies such as maintenance of activities
chemotherapy. Age range from 38 to 65 years. was used to regain a sense of control. Women

10
 Participants interviewed an average of 10.5 who were diagnosed through screening program
months after ending chemotherapy. were less likely to seek treatment information or
access cancer support services.

Kazer et al. Explore how single men get Semi-structured interviews 17 participants. This study provides information on single men's
(2011) their information and support. Cancer survivors prostate cancer experiences. This information
USA helps healthcare professionals meet the needs of
Men without partners. the non-partner more effectively and help them
Age ranged 46-87 years. assist men as they adjust to living with this
chronic illness.

Leydon et al. To investigate why cancer Qualitative study: in-depth 17 cancer patients, diagnosed within the While all patients desired basic information on
(2000) patients do not want or seek interviews past six months of the recruitment. diagnosis and treatment, some did not desire
information about their condition Female: 11. additional information. Three overarching
in addition to that sometimes Male: 6. attitudes limited the efforts to obtain additional
voluntarily by their doctors Based in the UK. information: faith in doctors, hope, and charity to
during their illness. fellow patients.

Lie et al. (2018) The purpose of this study was to Qualitative study: a 16 participants between the age of 18 and Young cancer patients perceived different and
investigate which challenges phenomenological- 35, in a cancer rehabilitation programme. persistent challenges throughout their treatment,
young adult cancer patients hermeneutic design, Based on Norwegian-speaking people. where coping with change and uncertainty seemed
experience during their treatment including retrospective, Female: 12. to depict an overarching topic.
and what coping strategies they semi-structured interviews Male: 4.
used.

Miller (2014) Explores uncertainty One on one interviews. 35 cancer survivors, 25 partners. Individuals dealt with uncertainty through a
management and information Based in the USA. number of information administrators and
seeking among cancer survivors. Age range of the survivors were 22-86 described that they experience a number of
years, age range of partners were 25-71. challenges in dealing with uncertainty through
Female survivors: 63%. information.
Male survivors: 37%.

Table 1. The included studies and their characteristics.

11
In the following we present a thematic analysis of the included studies.

Several studies explore the importance of gender and age on cancer patients’ information seeking for
coping. Some studies find that age is correlated with information seeking behaviour. Baumann et al.
(2017) identify gender-specific patterns and recommend considering sociodemographic, health-related,
and motivational determinants when describing the complex information seeking behaviours. The
results by Bennett et al. (2009) show that seeking information from sources beyond their physicians and
using different sources for seeking are associated with younger age. The authors conclude that
physicians should consider talking to older cancer survivors to encourage them find services that
support their recovery from cancer and cancer treatment. Lie et al. (2018) find that younger adult cancer
patients struggle with coping with changes and uncertainty in particularly related to five themes or
challenges. Information seeking is one of different the coping strategies applied to these challenges. On
the other hand Ebel et al. (2017) find that most participants used the Internet for information seeking
on health or medicine issues. Gender, age, or status could not be associated with the use of the
Internet. Consequently, the use of the internet does not seem to be tied to age, however, seeking
beyond the information offered by their physician as well as the information sources used seems to be
affected by age.

Gender-specific information seeking behaviours have also been explored in the literature, and a
number of gender-specific patterns identified. Kazer et al. (2011) find five themes when they explore
the behaviour of men without partners: going it alone, diagnosis and cancer treatment decision-making,
sources of information and support, the aftermath of cancer, and coping strategies. The authors argue
that the experience of unpartnered male cancer patients is unique in some ways and in other ways
similar to that of partnered patients. Bootsma et al. (2020) identify a number of unmet needs and
recommend that specific information on male breast cancer should be developed to improve timely
diagnosis, quality of life, treatment, and survival. Gibbons and Groarke (2018) explore the coping
strategies used by female breast cancer patients. Summing up, these three studies focus on female as
well as male cancer patients and thus offer unique perspectives on gender-specific information
behaviour without directly comparing genders.

Information seeking is just one of many coping strategies, and several studies have explored how these
strategies are related. Uncertainty seems to be one of the most significant factors that urges patients to
seek the means of coping. Being diagnosed with cancer can be described as an involuntary identity shift
and uncertainty seems to manifest as the individual enters this involuntary and fragile identity. Lifestyle
changes, means of treatment, and the chances of recovery, may also stand as apparent questionable
factors, that deepens the uncertainty, as well as the stress that accompanies it (Miller 2014, Lie et al.
2018). Ben-Tovim et al. (2002) find that coping with prostate cancer can be described along five
dimensions. One of these dimensions (positive problem solving) includes seeking information. Another
dimension (distress) includes information anxiety provoking, and the authors argue that information
provision is not a neutral process. Gibbons and Groarke (2018) find that a combination of coping

12
strategies was used by female breast cancer patients. Behavioural coping includes seeking information.
The participants engaged in information seeking to maintain a sense of control over treatment. Finally,
Leydon et al. (2000) find that all patients wanted basic information on diagnosis and treatment, but not
all wanted further information at all stages of their illness. The authors conclude that coping strategies
by cancer patients can limit their effort in obtaining the information they need. Cancer patients can
engage in information seeking activities as means to gain control. Blödt et al. (2018) find that the
meaning and role of information in the illness experiences were clearly associated with gaining control
in a seemingly uncontrollable situation. Control is regained in four ways: becoming confident in one’s
treatment decision, taking responsibility for one’s situation, understanding the consequences of the
disease and treatment for one’s life and dealing with fear. Furthermore, they find that information
seeking can be overwhelming. Thus, these studies of information seeking as a coping strategy among
many other strategies explore different aspects of coping: information seeking behaviour analysed
through coping dimensions, combinations of strategies, coping as means to gain control and coping
strategies as constraints.

Affect, mental health and well-being are tied to the information seeking behaviour by cancer patients.
Beckjord et al. (2008) find that increased cancer worry is associated with more attention to health
information, and that increased cancer worry, and symptoms of depression are associated with worse
cancer information-seeking experiences. The authors argue that their results suggest that affect plays a
role in health information processing. Beekers et al. (2015) find that lower satisfaction with received
information and perceived helpfulness of information are associated with depressive and anxious
symptoms. Their results also show that less Internet use is associated with depressive symptoms among
cancer patients. The authors conclude that the information provided to patients is suboptimal and that
the information provision should be adjusted to the individual needs of the cancer patients for better
mental health. Bennenbroek et al. (2002) find that cancer patients had a high need for social
comparison. This need was strongly influenced by a number of indicators of low well-being. The more
negatively patients evaluated their own health, and the higher the level of depressive symptoms, anxiety
and uncertainty, the greater the need for social comparison. They also find that patients want
information about others who are coping better to improve their own situation. Finally, Miller (2014)
finds that in some cases, seeking information provided answers and comfort and in other cases seeking
information just increased uncertainty and generated even more questions. Consequently, some
participants deliberately avoided information whereas others felt they needed more information.
The author concludes that the study “demonstrates the salient role information plays in the
management of one’s own, and one’s partner’s, uncertainty and implies that information may both
facilitate and complicate individuals’ management of cancer-related uncertainty” (Miller 2014, p. 242).
Summing up the studies of affect, mental health and well-being they all find that affect, mental health
and well-being has a strong impact on and is tied closely to cancer patients’ information behaviour.

13
Discussion
This systematic review of information seeking as coping for cancer patients has been conducted using
rigorous and systematic approaches following existing guidelines for the conduct of systematic reviews.
The process has resulted in 14 included studies that all explore how cancer patients use information
seeking as coping during their illness. Before discussing the implications of the findings, several
limitations need to be considered. First of all, rigorous and systematic approaches have been used to
retrieve relevant studies, however some may have been missed. Some elements of conceptualisation
models have lower retrieval potential than others but as the effectiveness of these models is not
established, we cannot determine this (Frandsen et al. 2021, Frandsen et al. 2020). Second, this review
includes 14 relevant studies and of course more relevant studies would have allowed for firmer
conclusions. More research is obviously needed to further our knowledge of information seeking for
coping. Despite the limitations, this review offers a synthesis of the 14 included studies that explore the
information seeking of cancer patients and focus on many different aspects.

The existing studies have focused primarily on demographic factors, coping strategies, the impact of
affect, mental health, and well-being. There are, thus, many aspects of the use of information seeking to
cope with cancer yet to be explored and information science approaches to analysing information
seeking offer promising insights in this exploration. The information science fields of seeking process,
information needs, and information use can contribute significantly with unique approaches to
information seeking for coping. The information needs, search tools used, and sources relied on by
cancer patients are examined in many of the included studies but using different perspectives.

Information needs are addressed in several of the included studies: Bootsma et al. (2020) explores
unmet information needs and make recommendations regarding the information provided to these
patients. Blödt et al. (2018) find that the information need of cancer patients can be based on
information gaps due to unsatisfactory communication with health professionals, and a majority of
patients seeks additional information after a consultation, although the amount may differ.
Bennenbroek et al. (2002) find that patients want information about others who are coping better than
themselves to improve their own situation. However, the existing studies focus more information needs
during the cancer continuum and less on the information behaviour in which these information needs
occur. In information science we can find inspiration for approaches to studying information needs.
Ma et al. (2021) explore the information seeking behaviour of Chinese family members of cancer
patients and among other interesting findings they find that stressful events give rise to questions which
prompt information-seeking behaviours. Similarly, Soroya et al. (2021) explore the information
behaviour and identify the characteristics of individuals more likely to feel information overload and
information anxiety during health crises.

The search process has been addressed primarily in terms of the use of the internet in cancer-related
information seeking. A majority of cancer patients use the Internet as a source of information

14
(Gibbons and Groarke 2018, Miller 2014). Several articles directly address online information seeking
(Miller 2014, Lie et al. 2018, Beekers et al. 2015, Beckjord et al. 2008). Without mentioning a specific
source of information, other studies report information seeking in general (Ben-Tovim et al. 2002,
Bennett et al. 2009). Ebel et al. (2017) finds that the Internet is predominantly used to get additional
information after a consultation with a physician and that patients value information depending on
source and character. However, information science offers more approaches to exploring the
information search process. Sarkar et al. (2020) explore the problems or barriers perceived by an
individual in different stages of information search. The existing literature on cancer patients’
information seeking deals little with the problems or barriers specific for using information seeking as
way to cope with serious illness. The existing models may not necessarily be applicable in the case of
cancer-related information seeking. An example of this line work is the study by Berget and MacFarlane
(2020) that focuses on users with impairments, and they conclude that there is a pressing need to
investigate the entire information seeking process and explore the impacts of impairments. They argue
that more information-seeking studies are needed and recommend addressing these special cases in
existing general information behaviour models. Similarly, cancer-related information seeking may
provide insights that would allow us to further our understanding of information seeking in general
which may lead to new or adjusted models.

The sources relied on by cancer patients when seeking information is to some extent addressed in the
included studies. Beekers et al. (2015) explore satisfaction with the information found and how this is
associated with depressive and anxious symptoms, and Bennenbroek et al. (2002) address the type of
information cancer patients look for based on their well-being. Information literacy challenges for
cancer-patients have received little attention in the existing literature and this is an area in which
information science researchers can contribute to the field. Information literacy challenges have been
explored recently by Haider and Sundin (2020) and Sundin (2020). Haider and Sundin (2020) argue that
establishing the credibility of information and information sources is imperative for the informed
citizen and suggest trust and agency as two dimensions. Sundin (2020) says that sociomaterial
perspectives to information literacy research are needed and argues that infrastructures, practices and
how practices are part of infrastructures are taken into consideration. The existing literature on
information seeking for coping with cancer could benefit from further analyses of how cancer patients
establish trust when seeking information while coping with serious illness as well as analyses of the
information seeking behaviour of cancer patients as communities of practice. Furthermore, Huvila
(2019) discusses how information is also made useful and taken into use in the course of information
work. More specifically, building on the notions of genre and situational appropriation, Huvila
addresses that in addition to being sought, existing information are made useful and taken into use. The
research on information seeking for coping with cancer could also benefit from focusing on how
existing knowledge is taken in to use when the patients cope with cancer.

15
Summing up, the existing studies of information seeking for coping with cancer draw little on
information science approaches, however, information science could contribute with unique and
significant contributions to the field. Information science approaches to studying information seeking
by cancer patients as means to cope with their illness can be empirical as well as theoretical. Empirical
work would include studies of cancer patients’ seeking process, information needs and information use.
Theoretical work would include considering how the information behaviour of cancer patients can
enlighten existing, general models of information seeking and potentially lead to revised or elaborated
models. Finally, information science in general and models of information seeking in particular could
also benefit from extending the field of information seeking to the use of information seeking for
coping during serious illness.

Conclusion
This review provides an overview of the existing literature on the information seeking of cancer
patients, what their means of satisfying these needs are, and how information seeking serve as a coping-
strategy. The existing studies pay special attention to demographic factors, coping strategies, the impact
of affect and mental health and how to gain control. There are studies suggesting that age and gender
are correlated with information seeking behaviour and some studies focus specifically on one gender.
However, there is also a study that does not find a correlation between gender, age, or status and the
use of the Internet. Coping strategies include among many others information seeking and they can be
used in combination. Uncertainty and the need to gain control in a seemingly uncontrollable situation
are significant factors when engaging in seeking activities for coping. Affect, mental health, and well-
being are tied to the information seeking behaviour by cancer patients. Indicators of affect, mental
health and well-being are correlated with information behaviour as well as information needs.
Information seeking activities can both provide answers and comfort as well as in other cases increase
uncertainty and generate even more questions.

Bringing research in this field into information science allows for promising perspectives on the use of
information seeking for coping with serious illness, including information literacy, the use of existing
information and the process of information searching.

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Supplementary material available at institutional repository (link: xxxx)

Search histories (including citation searches)

List of excluded studies
Data extraction

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