Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design

JMIR Cancer · 4 authors, 4 centres

AI SUMMARY

FIDELITY 100%

This summary was generated by AI from a single paper. It has not been reviewed by a clinician and is not clinical advice. Verify against the source before acting on it.

AGENT 01 · STRUCTURED SUMMARY

TRACE TO SOURCE

“

TL;DR

A classic grounded theory study with 21 cancer patients and informal caregivers in Alberta, Canada, developed 'orientation theory,' proposing that individuals use the internet to answer three key questions about each cancer challenge: why it is happening, what to expect, and how to manage it, with well-designed web content improving physical and psychosocial well-being.

Full summary

1,355 CHARS

This qualitative study used classic grounded theory to explore how cancer patients and informal caregivers use web-based information to navigate their cancer journey. Twenty-one adults aged mean 53 (SD 15.3) years, recruited from Alberta, Canada, participated through 23 one-on-one interviews, 5 focus groups, a discussion board, and emails. Participants included 67% patients, 29% informal caregivers, and 5% individuals in both roles. Breast, gynecological, and hematological cancers were the most common types, each representing 19% of participants. Google searching was identified as the primary approach for finding web-based information. The study developed 'orientation theory,' which proposes that internet searching attempts to address three key orientation questions for each cancer challenge: why it was happening, what to expect, and options for managing it. Better orientation was associated with improved physical and psychosocial well-being. Content characteristics such as distracting links, unfamiliar terms, distressing content, and lack of intuitive design reduced usefulness. Five recommendations for web-based content design were formulated. Limitations include data collected only from participants with internet access in a single-payer health care region, and the theory may not be universally applicable across different contexts.

STUDY TYPE

other

SPECIALTY

oncology

SUMMARISED BY

AI pipeline

FIDELITY CHECK

100% · A

ORIGINAL PAPER

PMC10233434

Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design

JMIR Cancer

READ THE FULL PAPER

ABSTRACT

Abstract Background The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development. Objective The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design. Methods Adults (≥18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures. Results A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19% each). In total, 67% (14/21) of patients, 29% (6/21) of informal caregivers, and 5% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google). Conclusions Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research. Keywords: health information behavior, neoplasm, theory, internet, information needs, adults

CITATION EXPORT

Maclean Thiessen, Shelly Raffin Bouchal, Patricia A Tang et al.. Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design. JMIR Cancer. (2023). https://doi.org/10.2196/41740

AUTHORS

4 · 4 CENTRES

Maclean Thiessen, Shelly Raffin Bouchal, Patricia A Tang, Shane Sinclair

1Department of Internal Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada
2Faculty of Nursing, University of Calgary, Calgary, AB, Canada
3Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
4Compassion Research Lab, Faculty of Nursing, University of Calgary, Calgary, AB, Canada