This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors.
The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs.
Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information.
The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory.
Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice.
One of the most commonly reported unmet supportive care needs of those facing cancer, including patients [
In a previous study conducted by the lead author (MT) [
Health information–seeking behavior (HISB) is a field of research encompassing how those affected by illness utilize health information. Important areas of study within HISB include how individuals seek, use, and share information [
The factors that affect HISB are complex, as illustrated by the examination of the Miller Behavioral Style Scale (MBSS) [
In the context of cancer, it is not clear how to optimally design interventions to support individuals in obtaining the health information that is most useful for them. In general, using theory to guide intervention design results in better outcomes [
Multiple theories have been used to guide both the understanding of HISB [
The objective of this study is to develop a grounded theory capable of guiding the creation of informational resources designed to assist individuals living with cancer in meeting their informational needs by minimizing the cost and maximizing the benefit of information seeking.
This study used classic grounded theory (CGT), a method for discovering theory through iterative data collection and analysis [
The study procedures, including the study design, data collection, analysis, and drafting of the report, were conducted primarily by the lead author, who was completing a medical oncology fellowship during the first year of the study and enrolled in a PhD graduate program as well as in active independent clinical practice as a medical oncologist for the subsequent portion of this study. The second and fourth authors provided methodological support in conducting and presenting the grounded theory analysis. The third author provided general research expertise and contextual expertise regarding clinical oncology practice.
Approval for this study was obtained through the Health Research Ethics Board of Alberta (Study ID: HREBA.CC-17-0365) before the initiation of recruitment, data collection, and data analysis.
Patients were recruited using posters and invitation letters from a large outpatient cancer facility in Western Canada. Interested patient participants contacted the lead author or primary investigator who provided further details of this study, including its methods, objectives, risks, benefits, and obtained written consent. The patient participants were invited to approach any friends and family to participate in this study as secondary participants. This study was open to all patients aged 18 years or older who had received oncology care. Friends and family participants aged 18 years or older were welcome to participate. Exclusion criteria were limited to not being able to communicate in English and being aged below 18 years. Incentives for participation included being eligible to win one of four Can $25 (US $18.79) gift certificates.
The rationale for inclusion of both friends and family participants as well as patient participants in this study was three-fold. First, it was assumed that, besides instances where patients were receiving medications affecting their cognition or had severe neurological sequelae of their cancer, such as a debilitating brain metastasis, there would be no psychological or sociological phenomena differentiating the processes of information seeking and use for those diagnosed with cancer from their family and friends. Therefore, the concepts and resulting theory that would emerge would likely be valid for both friends and family as well as patients. Second, it is recognized that informal caregivers are often left behind when it comes to supportive care research, including research related to information needs. Although the theory that was expected to emerge would likely be applicable to both groups, without including both patients and friends and family in the study, the validity of the theory for the group not included would likely be questioned. Finally, the contrasting perspectives of friends and family and patients were expected to provide extremely useful data for the purposes of constant comparison, ensuring that theoretical saturation occurred [
After obtaining written consent, all participants completed a demographic questionnaire (
All interviews were semistructured (
Data analysis using constant comparison was carried out in keeping with the CGT [
A total of 37 patients and 36 friends and family consented to be contacted for interviews, with 31 patients and 29 friends and family (
Interviewed participants’ demographics (n=60).
Interviewed participants | Values | |||
|
|
|||
|
Age (years), mean (range) | 60 (29-81) | ||
|
|
|||
|
|
Male | 14 (45) | |
|
|
Female | 17 (55) | |
|
|
|||
|
|
Yes | 26 (84) | |
|
|
No | 5 (16) | |
|
|
|||
|
|
Yes | 19 (61) | |
|
|
No | 12 (39) | |
|
|
|||
|
|
Colorectal | 8 (26) | |
|
|
Noncolorectal gastrointestinal malignancy | 5 (16) | |
|
|
Breast | 9 (29) | |
|
|
Melanoma | 5 (16) | |
|
|
Hematologic malignancies | 3 (10) | |
|
|
Osteosarcoma | 1 (3) | |
|
||||
|
Age (years), mean (range) | 56 (27-83) | ||
|
|
|||
|
|
Spouse | 17 (59) | |
|
|
Child | 3 (10) | |
|
|
Sibling | 2 (7) | |
|
|
Parent | 2 (7) | |
|
|
Friend | 5 (17) |
The sample of patients who completed the interviews was relatively balanced in terms of gender and included patients with ages ranging from their late 20s to early 80s. Importantly, there was a mix of patients who were being treated with curative intent, as well as those being treated noncuratively for de novo or recurrent metastatic disease, suggesting a wide range of cancer experiences. In terms of friends and family interviewed, ages were similar to patients, likely reflecting the high number of spouses who were included in the interviews.
The primary finding, or core variable [
At the conclusion of this study, information was understood as the process of informing action based on the CRD that patients and their friends and family received about cancer. For those affected by cancer, CRD came from multiple sources, including health care providers, family, friends, and the internet. CRD from health care providers were the most credible and applicable; however, access to health care providers was often limited to clinical visits where the uptake of the CRD was limited. CRD found on the internet were readily accessible and provided an opportunity for repeated access. Received CRD are interpreted in the context of internal data, including the individual’s personal values, how the individual understands their life story, goals for the future, and previously obtained CRD. This process informs the individual’s actions related to managing cancer or their personal projects (eg, career, raising children, being physically fit). The concepts that comprise the theory are described in the following subsections. A graphical model of the theory is presented in
A graphical model of the theory of information access and use. The theory suggests that a cancer diagnosis is disruptive, in part, because it decreases the ability of an individual to effectively make decisions about how to invest their time and energy into their personal projects. This is due to a resulting lack of certainty about what to expect, both in terms of the cancer itself and how the consequences of cancer, such as treatment and altered life expectancy, will affect their personal projects. Information is understood as a process involving receiving data about cancer and interpreting it to increase the certainty of the outcome of different actions. High quality data, defined as data that is accessible, credible, applicable, and positively framed, enhances decision-making support and results in improved engagement with personal projects. The dark black arrowed lines represent aspects of the information/action continuum in which energy and time is diverted between personal projects and seeking information. The indirect winding line titled “uninformed decisions” illustrates the inefficient use of an individual’s finite energy and time when decisions are not informed by high-quality cancer data.
Personal projects refer to the collection of activities that an individual invests a significant amount of energy and time in over a prolonged period of their life. The following quote demonstrates how time and energy shift from one personal project (eg, child rearing) to another (eg, the project of being healthy) over the course of a lifetime:
I worked and I [raised] the kids and I was very involved, and I volunteered a ton and then once they graduated it was my turn. And I started to do things for me and get myself healthy and eat healthy and all that.
The personal projects of the participants created a unique context for each individual to face the challenges of the cancer experience. Each participant had a unique group of ongoing personal projects, allotting different amounts of time and energy to each, and each was ascribed with unique meaning. Importantly, before diagnosis, these personal projects—and the activities and roles that comprised them—were what the participants invested their time and energy in.
The personal projects of the participants were disrupted following the malignancy diagnosis. Energy and time were diverted from preexisting personal projects to managing the consequences of the cancer diagnosis. Some participants described being able to continue with most aspects of their personal projects but were unable to plan how these would fit into the future. This was because the necessary details that would facilitate planning, such as prognosis or the time and energy commitment needed for treatment, were not made clear for weeks, or even months, after the initial diagnosis. Others described that following the diagnosis, their personal projects essentially halted:
I was given the diagnosis, sent to the [hospital ward] and then I was in there for over I think it was two weeks or something or longer.
For friends and family, disruption to personal projects was related to the amount of support they provided to the individual who received the malignancy diagnosis. A partner of a patient described the disruptive effect of cancer as follows:
Well obviously, it’s been life altering. I guess it’s – it’s certainly changed what the priorities are in our short term, midterm and long-term activities. …because like the first priority is always caring for [spouse] making sure [they] get the right [treatment].
In this example, priorities were understood to relate to the relative energy and time that the participant planned to invest in various projects. In contrast, a participant identified as a friend to a primary participant but not as a central member of the patient’s support network indicated that the malignancy diagnosis was not disruptive to their personal projects stating:
I avoid the issue of [their] illness. …I don’t make [them] sick.
At the conclusion of this study, information came to be understood as a multistage process, with steps occurring both externally and internally to the individual. The process participants described included searching for, receiving, and interpreting data related to cancer (ie, CRD) to inform action related to their personal projects and managing cancer. CRD came in many forms, including through conversations with health care providers, friends and family, web searches, and personal experiences. Participants also described actively searching for CRD, using time and energy that would otherwise be used for their personal projects, to understand the diagnosis and its consequences. For instance, one participant described searching for CRD and using them to answer questions related to the project of raising a family following the malignancy diagnosis:
But at the start, ‘cause I was so scared, I thought “oh my God, I have these little kids that I have to raise” you know? I have a long haul ahead of me, like I got to get through this. What can I do that’s going to help benefit me in the long run? [...] what things are going to benefit me health wise? That’s going to… help me get through this?
This participant went on to describe finding books and other resources that contained CRD that were helpful in navigating the challenges of being a parent while dealing with the consequences of the malignancy.
In contrast to the CRD that were actively sought out, CRD were also obtained passively through sources such as TV shows, news, and casual conversations with friends and family and from clinical encounters with physicians and nurses. In addition, participants indicated that although much of the CRD that they used were obtained from external sources, they also identified internal sources of CRD. For instance, personal knowledge gained from previous cancer experiences with family and friends was identified as an important source of CRD.
After CRD were accessed, participants described using it to guide both small-scale decisions, such as the day-to-day logistical coordination of the activities related to a single personal project (eg, taking time off work to provide transportation to a patient), and large-scale decisions, such as those that would affect all of an individual’s personal projects:
[...] if I had had a better idea about what the progression, the path [forward] is going to be - that would be helpful for me. [...] And I want to plan, right now I want to plan 6 months, I want to plan a year from now. [...] Because of this situation I’m going to be leaving my job and [moving] and to the extent possible I’d like to know, this sounds terribly selfish, but there’s a little bit of: how does this affect me?
To understand how information could be optimally provided to those affected by cancer, many of the study interviews included a focus on how CRD had been provided through the cancer center or by clinicians, whether these CRD were helpful, and discussions about how CRD could be better provided. Through this exploration, and the many contrasting examples provided by the participants, 4 themes defining the quality of CRD were identified: accessibility, credibility, applicability, and framing.
Accessibility refers to how CRD are made available to individuals and is characterized by
Some external CRD sources can have limited accessibility, whereas others can be repeatedly and conveniently accessed. Health care providers and cancer centers are sources of CRD that have limited access. Participants described CRD available through clinic visits, support groups, and education sessions as being accessible only in certain locations and at certain times. As a result, the CRD provided were not always able to be effectively received. One participant described the experience of comparing the details that they recalled from clinician visits with a friend who had been present for the visits and had been taking notes:
I still haven’t been to a single appointment without bringing someone with me. [...] every single car ride home [when we discuss the appointment] it was like we were in two different [doctor’s visits].
Resources that could be accessed repeatedly, such as printed materials or the internet, allowed participants to access and interpret CRD at their own pace. The internet was a highly accessible source of CRD for many participants. One patient participant described being confused about the prognosis of their breast cancer despite receiving prognostic CRD from a physician. The participant used Google to gather additional CRD as the physician was not readily available to provide further clarification. The participant eventually decided to accept the treatment that had been recommended after learning through the internet that their breast cancer is a “more aggressive type so that’s kind of scary, but then there’s the treatment for a year that’s supposed to balance it out” (Patient 29).
For CRD sources with limited access, participants needed to be able to receive them when they were available. Timing refers to issues where individuals are simply not able to receive CRD even if they are physically presented with CRD. One friend and family participant described an instance of poor timing when CRD was shared with a loved one who was in the hospital and recovering from cancer surgery:
Well, he was on hard drugs. So I couldn’t – like he is stoned, when he was in the hospital. And they are throwing a ton of information at him that I am having a hard time grasping and retaining and so he doesn’t have a hope in hell of getting it.
Organization affects how efficiently individuals are able to identify what content of the provided CRD is relevant to them. One participant described the experience of receiving a printed package of CRD from the cancer center, and the subsequent investment of energy and time to identify what was important:
[...] it was a lot of brochures and then for me it was about weeding out what was important and relevant, so I just focused on like overall what’s going to happen with chemo and then just hone in on like [the patient’s type of cancer]. Not that anything – like it’s not like the other things aren’t relevant but [I had to focus on] what I could like absorb [and] what I needed to know.
The complexity of the CRD being shared also affected participants’ ability to interpret it. One participant described receiving CRD with technical medical content as “good, but you can only give so much to a laymen and they’re not going to understand the rest of it like, it can only be so difficult” (Friends and Family 15). Another participant described the amount of time and energy required to navigate through complicated treatment decisions that had been offered by the medical oncologists. The participant described having multiple “family group meetings” (Friends and Family 9) in which the members of the family would sit in the patient’s living room and repeatedly play the recording of the doctor’s visit, trying to understand the CRD that were shared in the consultation to make decisions both regarding medical management and how to plan their lives around the data received.
The method of delivery was also important in terms of participants’ ability to access CRD. Different formats of delivery, such as face-to-face discussions with clinicians, education sessions at the cancer center, and internet content, resulted in differences in terms of ease of access. Participants also expressed relative differences in their comfort in each format. Text-based CRD were universally described as helpful. However, some individuals expressed issues with retrieving internet content (“I don’t do the computer” [Patient 3]) or a preference for reading things on paper as opposed to on a computer or smartphone screen.
Participants described receiving CRD from their health care providers, friends, family, the internet, TV, and other cancer survivors. The usefulness of these CRD was related to the credibility (ie, reliability) of the source.
CRD received from health care providers, including handouts and brochures, were generally considered credible. Oncology specialists, including physicians and nurses, were identified as being the most credible sources of CRD. They were described as being able to anticipate questions and provide answers without even being asked, capable of providing reassurance, and answering the patient’s questions based on “where [the patient was] coming from” (Patient 7). General practitioners or family physicians were also considered credible sources; however, several participants indicated that they received little CRD about their cancer from their general practitioner. One participant indicated that they did not trust anything from the general practitioner stating that the general practitioner had “missed the diagnosis [of malignancy] for many years” (Patient 1). Although participants described various degrees of trust in internet sources of CRD, websites such as the Canadian Cancer Society’s website were identified as highly credible.
Cancer survivors, defined here as those with a personal diagnosis or the close friend or family member of someone with a diagnosis [
Since I have seen people stay over 10 years with [specific type of cancer], I’m hoping I will stay about 10 years [...]. I met a woman who told me “oh, this is my 10th year” [...]. So I believe that if some people can survive it then I will.
Participants also described CRD from sources that were not credible. They described interactions with well-meaning friends and family who provided CRD about conspiracy theories and unproven controversial treatments. These examples of CRD were described as “uncomfortable noise” (Patient 30) requiring time and energy to evaluate both its credibility and how best to manage the relationship with its source.
Although participants described the CRD obtained from health care providers as highly credible, the data were not always applicable. Participants described receiving general information packages about nutrition and managing side effects but finding these of limited use or even a source of potential distress. One participant who was receiving immunotherapy described receiving a list of potential side effects of treatment from the medical team providing treatment. The participant described reading through the list and feeling anxious about the potential side effects only to become frustrated when at the bottom of the list it said that immunotherapy patients should “ignore [the list of side effects] and just call the triage number” (Patient 17).
Many participants described receiving CRD from the TV and the internet. CRD from these sources presented challenges for the participants as they were a potential source of fear. One participant described being: "worried about how bad [chemotherapy] was going to be” based on “pictur[ing] it from TV and stuff. Like people just puking all the time” only to find that “nausea was hardly a problem" [Patient 31].
Personal experience provided a source of internal CRD considered to be extremely applicable. Participants, including patients and those supporting them, described that as they gained personal experience with receiving medical care, they were able to find a “rhythm” (Patient 31) as they knew what to expect. This allowed them to become increasingly able to plan activities related to their personal projects, such as their work or other relationships. However, each new challenge, such as an unfamiliar treatment, procedure, or symptom, had the potential to interrupt this rhythm, causing disruption until a new rhythm could be established.
Whether CRD were framed in a
Maybe they’re not right with me. Maybe I’m one of the 5%, because I exercise or whatever... I can pretend that maybe I’m one of the [few] that will beat this, to some degree, not beat it forever, but go a little longer than they told me.
You don’t want someone telling you, you’re for sure going to have, you know, a really bad rash on your hands and feet. You want someone saying, you might have a bad rash on your feet
They’ve been amazing, everybody. And helpful, and encouraging. [...] They haven’t been negative about [it], they’ve just said that there is no cure for this
I guess the negative part to me is – cause I’ve heard and seen people that [say] “well I have cancer so I’m going to die, I know that whether it’s five years down the road, I’m going to die.” [...] The negative part is “I’m going to die” you know?
A classic definition of information is “a difference in matter-energy which affects uncertainty in a situation where a choice exists among a set of alternatives” [
The risk benefit consideration identified in existing theories, such as the HIA [
An important component of the information process, in addition to seeking, receiving, and ultimately acting on CRD, occurs between when CRD are received and action occurs. Although the process of interpreting CRD to inform action was not explored explicitly in this study, insights can be gained by examining the findings of this study in conjunction with the existing literature. First, participants in this study indicated that some of their decisions regarding treatment and their personal lives were based on limited or inaccurate CRD. Second, as participants shared and reflected on their cancer journey they both reflected feeling and displayed anger, sadness, joy, and a wide range of other emotions. Both observations are congruent with the existing literature regarding the challenges individuals living with cancer face in obtaining useful information [
The insights gained from the data regarding emotions and decision making is important because they add depth to the concept of accessibility and the subconcept of timing that emerged from this theory. On the basis of the theoretical and empirical data regarding emotion and decision making [
The theory that emerged in this study is useful because it identifies guiding concepts for developing high-quality CRD. Providing CRD that are accessible, credible, applicable, and positively framed is predicted to minimize the cost and maximize the benefit of information seeking. On the basis of what was shared by the participants in the interviews and the resulting theory, it is expected that the internet will be the primary delivery method of any novel informational intervention informed by this study. Although universal access to the internet is not a reality, with barriers to access existing for some groups such as those of low socioeconomic status [
Perhaps the biggest challenge with providing highly accessible internet-based CRD is ensuring that it is adequately applicable to “assist with anticipating the sequence of events that will likely take place” [
Given the current state of oncology practice, developing informational interventions that deliver high-quality CRD is likely possible. Contemporary clinical oncology practice relies on evidence-based, guideline-informed practice. A recent retrospective analysis of the Surveillance, Epidemiology, and End Results Program-Medicare database identified deviations from guideline recommendations in the metastatic breast cancer setting occurring only 18% of the time [
The theory that emerged in this study informs current clinical practice in several ways. First, it highlights that clinicians are an important source of CRD. The CRD they provide is considered to be both highly credible [
It is anticipated that this theory will be useful in guiding the development of novel interventions by providing a framework of key considerations for maximizing the benefit of information seeking in the cancer context. However, it does not provide explicit guidance on content to be included in a novel resource or the format of that content. Although the information needs of those affected by cancer are well characterized, it is not clear from the literature what specific content and resources would be most helpful for meeting those needs. Researchers are encouraged to build on this study and engage with those affected by cancer as partners [
This theory was generated by engaging with adult patients and their friends and family, without exclusion on the basis of cancer type, stage, or treatment intent. The sampling approach focused on obtaining diverse, contrasting perspectives and experiences [
The objective of this study is to develop a theoretical framework grounded in the cancer experience capable of guiding the development of informational resources. The framework that emerged links the quality of CRD received to the impact that the cancer diagnosis has on an individual’s life. The theory comprises 4 variables: personal projects, cancer as a project that interferes with existing personal projects, information as the process of receiving and processing CRD to inform action, and CRD quality. Key features of high-quality CRD include accessibility, credibility, applicability, and framing. On the basis of this theory, the internet is foundational for delivering highly accessible information interventions. Clinicians are encouraged to consider accessibility and framing in how they provide information to those they care for. Future directions for research are expected to include engaging with those affected by cancer as partners to develop and integrate informational interventions based on this theory into clinical care. Interventions informed by this theoretical work are expected to help individuals remain effectively engaged with the personal projects in their lives following a cancer diagnosis and minimize the disruptive impact of the cancer diagnosis on patients and their informal caregivers by decreasing the cost of obtaining useful information.
Demographic or intake questionnaire used to guide selection of interview participants.
Initial interview guide for semistructured interviews.
classic grounded theory
cancer-related data
health information acquisition
health information–seeking behavior
Miller Behavioral Style Scale
patient decision aid
The authors would like to acknowledge the participants of this study who graciously shared their time, the details of their cancer experience, and their wisdom for the benefit of others.
None declared.