Live, Learn, Pass It on

Abstract

Introduction:The objective of this project was to engage survivor–advocates by describing their experiences living with lung cancer in an era of increasing treatment options.Methods:This was a qualitative engagement project with participants from a lung cancer advocacy organization’s survivor advisory board. Interviews were conducted, transcribed, and analyzed for stages and associated experiences using interpretive phenomenological analysis and elements of narrative analysis, in partnership with the patient advocacy organization.Results:Of 27 engaged members, interviews were conducted with 19, mostly long-term survivors with stage 3 or 4 lung cancer. Within the quest for patient-centeredness, we identified 3 stages of the patient experience. The stage Live describes the journey of the lived experience; Learn describes the quest for knowledge, empowerment, and skills; and Pass it on describes making a difference through guiding others, building awareness, and community.Conclusions:Lung cancer survivor–advocates have an intertwined experience of their personal journey, the quest for knowledge, and developing advocacy. Future patient engagement can incorporate these findings into increasing the survivor-centeredness of partnerships and research, particularly for quality of life and shared decision-making.

“An Expanded Window of Understanding a Changed Everyday Life”—Experiences From Patients With Long-Term Conditions After Attending Group Learning Sessions

“…This has also been found in a study of survivors from lung cancer, describing their experiences as a journey. After the quest for survivorship, they had a need for learning about the disease and later on for advocacy and helping others ( 20 ). Also, sharing lived experiences has been described as more appreciated comparable to the educational part during an intervention for adults with heart failure ( 21 ).…”

“…The meaning as in learning as experience described in the social theory of learning is the way participants talk about the ability to change—both individually and collectively—if it is experienced as meaningful to be part of the group ( 9 ). Others have also described community as vital and include the value of sharing knowledge with others who understand the unique situation ( 20 ). In group learning sessions with people with eating disorders, participants describe that attending the group helped them to clarify personal values outside their condition and how to prioritize recovery and encourage one another toward behavioral change ( 25 ).…”

Diagnostic Timelines and Self-reported Symptoms of Patients With Lung and Gastrointestinal Cancers Undergoing Radiation Therapy

“…patients presenting only with a cough or are non-smokers) [8,9], poor communication of the diagnosis from the oncologist, [8,10] as well as the timeliness of diagnosis and receiving results [9]. Factors in uencing patient experience during cancer therapies include feeling uninvolved in treatment decisions [10], lack of information regarding treatment options [8,11,12] and inadequate management of side effects [8]. Patients also describe challenges in accessing supportive resources, including emotional support, indicating unmet supportive care needs for this population [8,13].…”