Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory

Abstract

Background 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. Objective 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. Methods 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. Results 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. Conclusions 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.

Impact of Telemedicine Use by Oncology Physicians on the Patient and Informal Caregiver Experience of Receiving Care: Protocol for a Scoping Review in the Context of COVID-19

“…A recent report by the lead author of this protocol (MT) identified key characteristics of high-quality information. These emerged from semistructured interviews with 60 patients with cancer and their friends and family [21]. The interview data were analyzed using Classical Grounded Theory [22][23][24].…”

“…Framing was defined as how the information was presented, with particular focus on whether the information identified ways that the cancer situation could be optimized, either by clinicians or by the individuals receiving the information. Using the framework provided by this previous study [21], both from a patient and informal caregiver perspective, receiving care through telemedicine may be more accessible than through traditional in-person encounters. However, some important information conveyed through in-person interactions maybe not be transmitted.…”

Fit theory: A cancer experience grounded theory emerging from semi-structured interviews with cancer patients and informal caregivers in Manitoba Canada during the COVID-19 pandemic

“…The coding process progressed through open, selective and theoretical coding in keeping with methods well described elsewhere [22,23,25]. Data collection, analysis, and drafting of the manuscript was conducted by the first author (MT), a researcher and practicing medical oncologist who has conducted and published previous work employing classic grounded theory methods [28,29]. He has received training in conducting classic grounded theory research as well as qualitative research methods in general at the masters and doctoral level.…”

“…Specify the criteria built into the researcher's thinking Relevant to this work, the primary researcher's (MT) work regarding the experience of living with cancer is informed by Freire's critical education theory [31], and the identity theory of Stets and Burke [32]. While not intended to directly build on the researcher's previous work, the two previous grounded theories authored by the researcher [28,29] articulate the researchers a priori assumptions-such as those regarding the impact a cancer diagnosis has on identity and information quality impacts the cancer journey.…”

How aging of the global population is changing oncology

“…For young and fit patients similar to those recruited for trials, heuristic decision-making based on randomized trials showing survival benefit is appropriate, and for older patients such benefits also remain important [111]. Additional considerations may be prized by older adults, however [112]: these include humanistic prioritization of quality of life [113,114], holistic balancing of mechanistic interventions with decisional autonomy [115][116][117], and hermeneutic notions of acceptance and finitude [118,119] (Figure 3). Hence, one challenge is how to encourage older patients to include these value-adding endpoints in their decision-making without feeling that they are neglecting life-threatening survival priorities.…”