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

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.

Examining the development of information needs assessment tools for use in the cancer context: A scoping and critical review

“…First, very few questionnaires were identified that are suitable for assessing information needs regarding specific cancer challenges (Thiessen et al 2023). Of the 21 questionnaires, only 7 focused on specific challenges arising during the cancer journey such as curative intent treatment decision-making in prostate cancer (D' Alimonte et al 2011;Feldman-stewart et al 2001) or lymphedema in the breast cancer context (Dorri et al 2020).…”

“…The expertise of health-care providers and the value of the peer-reviewed literature should not be discounted. However, the risks associated with not including patients and informal caregivers in developing questionnaires that are intended to assess their informational needs are important as discrepancies between what those receiving health care want to know and what those providing it feel is important to share are known to exist (Thiessen et al 2023). Data collected from these questionnaires may inform research conclusions and ultimately the evolution of clinical practice.…”

“…Until more tools are available for assessing the informational needs related to each of the many challenges individuals face along the cancer journey, including the expressed needs of those with lived cancer experience, clinicians are encouraged to consider that, despite best efforts, many informational needs will go unrecognized and unaddressed in the front-line clinical context. As such, clinicians are encouraged to support patients and informal caregivers in accessing specialized cancer informational resources such as nurse educators and reputable online content (Thiessen et al 2023). Perhaps most importantly, clinicians are encouraged to work with those in their care to understand how the issues they are navigating in their lives while receiving cancer treatment can be mitigated through information sharing and education, both on an individual and systemic level.…”

Description of Information Needs in Cervical Cancer Patients

“…Semua responden memilih sumber informasi dari pelayanan kesehatan, dan sebanyak 44 responden (66.7%) memilih menggunakan sumber informasi dari pasien kanker serviks lainnya. Menurut penelitian yang dilakukan oleh Thiessen et al (2023) di Kanada, responden penelitian konsisten dan lebih mempercayai informasi yang diberikan oleh profesional layanan kesehatan dibandingkan sumber informasi lainnya. Sumber informasi adalah tempat seseorang mencari informasi untuk menambah pengetahuan dan dijadikan sebagai acuan untuk menentukan sikap yang benar, dan sumber informasi tidak terbatas pada pelayanan kesehatan saja tetapi juga dari televisi, internet, keuarga dan teman (Thiessen et al, 2023).…”

“…Menurut penelitian yang dilakukan oleh Thiessen et al (2023) di Kanada, responden penelitian konsisten dan lebih mempercayai informasi yang diberikan oleh profesional layanan kesehatan dibandingkan sumber informasi lainnya. Sumber informasi adalah tempat seseorang mencari informasi untuk menambah pengetahuan dan dijadikan sebagai acuan untuk menentukan sikap yang benar, dan sumber informasi tidak terbatas pada pelayanan kesehatan saja tetapi juga dari televisi, internet, keuarga dan teman (Thiessen et al, 2023). Seseorang memiliki tingkat kenyamanan yang berbeda-beda terhadap penyedia layanan kesehatan, dan lebih memilih mencari informasi kepada selain tenaga kesehatan.…”