Abstract
Background
Stigma is a pervasive and distressing problem experienced frequently by lung cancer patients, and there is a lack of psychosocial interventions that target the reduction of lung cancer stigma. Mindful self-compassion (MSC) is an empirically supported intervention demonstrated to increase self-compassion and reduce feelings of shame and distress in non-cancer populations. However, there are several anticipated challenges for delivering MSC to lung cancer patients, and modifications may be needed to improve acceptability, appropriateness, and feasibility.
Purpose
To gather feedback from lung cancer patients, psycho-oncology researchers, expert MSC teachers, and oncology clinicians to identify themes supporting the adaptation of MSC to reduce lung cancer stigma.
Methods
We conducted a two-phase process of stakeholder focus groups with researchers and clinicians (n=12) and semi-structured interviews with lung cancer patients (n=14) with elevated stigma. Transcripts were analyzed using thematic content analysis.
Results
Five themes were identified: (i) Patients expressed a desire for an intervention that bolstered self-compassion and addressed stigma; (ii) Intervention instructions were acceptable and understood clearly; (iii) Patients preferred intervention content to directly address lung cancer and stigma yet mentioned that doing so should be done with sensitivity; (iv) Ambivalence about delivering the intervention in person or remotely; (v) Acceptance for an intervention of 8-weeks (or longer) with 90-minute sessions and a group size of ≤ 15.
Conclusions
Findings informed the development of an adapted clinical protocol for MSC for lung cancer (MSC-LC), which can be pilot tested to determine implementation outcomes (e.g. acceptability, feasibility, efficacy).
Keywords: self-compassion, lung cancer, mindfulness, adaptation, stigma
To bolster self-compassion and reduce stigma for lung cancer patients, perspectives from adults diagnosed with lung cancer, psycho-oncology researchers, expert mindfulness teachers, and oncology clinicians were systematically collected and integrated to inform the development of an adapted intervention program called mindful self-compassion for lung cancer (MSC-LC).
Implications.
Practice: Mindful self-compassion for lung cancer (MSC-LC) is a patient-centered, disease-tailored psychosocial intervention that is designed to reduce stigma among adults diagnosed with lung cancer and can be scaled widely using a videoconferencing method of intervention delivery.
Policy: Comprehensive care for adults diagnosed with lung cancer must include psychosocial interventions that aim to reduce distress and promote quality of life, and policymakers should consider integrating programs like MSC-LC within their healthcare systems to expand reach.
Research: Future research is needed to pilot test the MSC-LC intervention and evaluate early implementation outcomes.
Introduction
Lung cancer patients frequently experience stigma [1–3], which is defined as the perception and internalization of negative appraisal from others related to their lung cancer [4]. Lung cancer is stigmatized primarily due to its association with smoking, which leads to the harmful perception of the disease as self-inflicted [2, 3]. Aligned with the Conceptual Model of Lung Cancer Stigma [4], experiences of stigma can become internalized by lung cancer patients, characterized by feelings of shame, guilt, regret, self-blame or self-criticism, and constrained disclosure [5, 6]. Cross-sectional and longitudinal evidence demonstrate that higher lung cancer stigma is associated with several clinically relevant outcomes including longer diagnostic delay [7], higher depressive symptoms [8], higher anxiety [9], more bothersome physical symptoms [10], and declining quality of life during medical treatment [11]. As such, there is a need for patient-focused interventions that target the reduction of internalized lung cancer stigma [12, 13].
To develop efficacious stigma-reduction interventions, it is important to identify psychosocial processes that may buffer against the internalization of lung cancer stigma and reduce feelings of shame and self-criticism. Self-compassion (i.e. directed kindness towards oneself amid suffering) is a promising intervention target, based on research demonstrating that higher self-compassion in lung cancer is associated significantly with lower stigma, distress, and depressive symptoms [10, 14–16]. Additionally, one longitudinal study showed that higher self-compassion mitigated the relationship between higher internalized lung cancer stigma and worsening depressive symptoms over time [10]. Researchers have developed interventions to enhance self-compassion, and experimental findings from non-cancer samples demonstrate that these interventions reduce feelings of shame, self-criticism, and distress [17–19], suggesting that promoting self-compassion may be an effective strategy to reduce internalized lung cancer stigma.
The Mindful Self-Compassion (MSC) program is one of the first interventions that demonstrated efficacy in bolstering self-compassion [17]. The MSC program focuses on enhancing the three components of self-compassion: (i) Mindfulness—balanced awareness of one’s painful thoughts and feelings; (ii) Common humanity—recognizing experiences of suffering as part of the larger human experience; and (iii) Self-kindness—offering kindness to oneself rather than self-judgment during difficult times [17, 20]. MSC is a protocolized, group-based intervention in which two trained facilitators guide participants through didactic topics (e.g. “what is self-compassion?”), meditation practices, and reflective exercises across eight weekly sessions and a half-day silent retreat [20]. MSC has been delivered to patients with other medical conditions (e.g. diabetes, chronic pain), yielding significant effects on disease-specific outcomes [21, 22]. Additionally, delivery of MSC to non-advanced stage cancer patients was demonstrated feasible and acceptable in one pilot study [23]. However, lung cancer patients are most likely to be diagnosed at advanced stages of disease and experience higher symptom burden than patients with other types of cancers [24, 25]. As such, lung cancer patients face several barriers that may interfere with engagement in and completion of MSC, including the practice of breath-focused meditation (which may be uncomfortable for patients with breathing difficulties) [26]; the time-intensive nature of the intervention (i.e. 165 minutes per session) amid persistent fatigue [27]; and illness-related challenges that may prohibit reliable in-person attendance [28]. Creating an adapted version of MSC that maintains core components yet addresses these challenges may be an effective strategy to reduce internalized lung cancer stigma.
Best practice recommendations for adapting evidence-based interventions underscore the importance of gathering feedback from patients and other stakeholders to guide changes that meet the needs of the new target population, while maintaining high fidelity to the core intervention elements [29]. Specifically, there is a need to address three areas of potential mismatch between the intervention and the new target population: (i) affective motivation to engage with the intervention (i.e. degree of acceptance or rejection of intervention messages); (ii) cognitive-information processing of intervention material (i.e. ability to understand the intervention messages); and (iii) ecological factors (e.g. mobility/transportation needs, preferences for in-person vs. telehealth delivery) [30]. To address this need, the current qualitative study utilized a multiphase process to elicit feedback from lung cancer patients, oncology clinicians, expert MSC teachers, and psycho-oncology researchers on MSC intervention content, delivery, and format. By identifying themes from these key groups, we aimed to create an adapted version of MSC that meets the needs of lung cancer patients and targets the reduction of stigma.
Method
Study design
This study involved a two-phase process of (i) conducting stakeholder focus groups to guide the initial adaptation of the MSC intervention and (ii) conducing in-depth 1:1 interviews with lung cancer patients to explore patients’ reactions to intervention content and preferences for format and delivery to guide further adaptation. The order of these phases is aligned with the CDC Map of Adaptation process to adapt behavioral interventions for chronic illness populations [29]. We used the themes from this two-phase process to adapt the MSC protocol, classifying adaptations in alignment with the Framework for Reporting Adaptations and Modifications-Expanded (FRAME) [31, 32], which is a structured coding system that systematically documents modifications made to the content of interventions (e.g. tailoring language, removing elements) and the context in which they are delivered (e.g. changes in format or setting).
A panel of eight content experts reviewed the initial modifications for further feedback prior to submitting the adapted protocol for review and approval from the Center for Mindful Self-Compassion, which is the entity responsible for all permissions and approvals of MSC adaptations. The Institutional Review Boards at Memorial Sloan Kettering Cancer Center and Loyola Marymount University reviewed and approved all study procedures.
Clinician and researcher focus groups
This study used a purposive sampling strategy, a typical approach in qualitative research designs to elicit targeted feedback from individuals or groups with experience related to the topic of inquiry [33]. As such, the study team selected researchers and clinicians with expertise in lung cancer stigma, in the delivery of MSC, and/or in working clinically with lung cancer patients, using a maximum variation sampling strategy wherein individuals were selected to elicit different perceptions on the adaptation of MSC. A panel of 12 clinicians and researchers participated in one of two focus group discussions (n=6 in each, 60–90 min), which were co-facilitated by two study team members (TJW, NE) using a semi-structured guide (e.g. “In what ways might the MSC program need to be adapted to fit the needs of patients with lung cancer?”). Among the n=12 researchers and clinicians, five had expertise in lung cancer stigma, six had expertise in the delivery of MSC, and seven worked clinically with lung cancer patients (the total exceeds 12 because there were six participants who had expertise in more than one area).
Patient interviews
Individuals were eligible if they (i) were diagnosed with lung cancer (any type, any diagnosis duration); (ii) were at least 18 years of age; (iii) report elevated lung cancer stigma (≥ 38 total score on the Lung Cancer Stigma Inventory [6, 8]); and (iv) able to respond to questions in English. From April-June 2022, patients were recruited from Memorial Sloan Kettering Cancer Center in coordination with their treating clinician. A member of the research team (TJW) conducted semi-structured interviews (60–90 min) with 14 lung cancer patients, who responded to questions and probes (see Online Appendix 1), reacted to instructions from a sample MSC activity, and self-reported demographic and medical characteristics. Interviews continued until thematic saturation (when no new concepts emerged from interviews).
Data analysis
Focus group discussions and interviews were audio-recorded and transcribed verbatim. Transcripts were coded by an interdisciplinary coding team, consisting of the study Principal Investigator (TJW), two qualitative methodologists (JG, NE), and a fourth member of the study team who was trained in qualitative data analysis (WMB). Data from focus groups and interviews were coded inductively and deductively using thematic content analysis [34]. Coders first read transcripts independently to generate initial descriptive and interpretive codes about the intervention content, structure, and format, focused on theoretically-rooted dimensions of intervention adaptation [29, 30]: (i) affective motivation to engage with the intervention; (ii) cognitive-information processing; and (iii) ecological factors. Separate codebooks were developed for each data source. The team met regularly to reach consensus about which codes to examine further, refine definitions and decision rules for each code [35]. The coding team applied all codes to the transcripts, and consensus meetings were held to review, summarize, integrate, and interpret the coded selections into categories and themes, which were approved by the full study team. NVivo software was used to facilitate the qualitative analysis process. The study team then came to consensus on modifications to MSC, which were documented according to the FRAME.
Results
Lung cancer patients who participated in the interviews (n=14) were between the ages of 46–74 (Median = 64). Four of the patients were male and 10 were female. Nine identified as non-Hispanic White, one as Black/African American, one as Asian, and three as Hispanic. Nine were married, four were divorced/separated, and one was single. Three attained a high school diploma, three completed some college, two completed a bachelor’s degree, and six completed a graduate degree. Two were diagnosed with stage I lung cancer, three with stage IIIA, two with stage IIIB, and seven with stage IV. Time since diagnosis ranged from five months to eight years (at the time of the interview). Patients varied regarding smoking history, including seven who never smoked and seven who formerly smoked (time since quitting ranged from 4 months to 40 years).
Five themes were identified through focus groups and interviews, which are described below with supporting quotes. A list of codes used to generate themes is presented in Table 1.
Table 1.
Major themes and associated codes
| Theme | Codebook | Code categories | Major codes |
|---|---|---|---|
| Strong desire for a disease-tailored MSC intervention that bolsters self-compassion and reduces lung cancer stigma | Interviews | - Affective motivation to engage with the intervention | - Acceptance/engagement with intervention content - Rejection/disengagement with intervention content - Stigma relevance |
| Focus groups | - Considerations for the research trial | - Anticipated outcomes from MSC pilot | |
| Discussing lung cancer and stigma directly in MSC sessions yet with purpose and sensitivity | Interviews | - Affective motivation to engage with the intervention | - Lung cancer tailoring - Stigma relevance - Suggestions for modification - Reactions to MSC Activity |
| Focus groups | - Intervention content | - Stigma relevance | |
| Tailoring MSC instructions to offer choices and promote engagement | Interviews | - Affective motivation to engage with the intervention - Cognitive-information processing of intervention material |
- Lung cancer tailoring - Meditation & breath work - Suggestions for modification - Reactions to MSC Activity |
| Focus groups | Intervention content | - Disease-relevance | |
| Weighing the pros and cons of an in-person vs. remote delivery mode | Interviews | - Delivery mode, format, and structure - Ecological factors |
- Delivery mode - Ecological barriers - Ecological facilitators |
| Focus groups | Delivery mode, format, and structure | - Delivery mode | |
| Recommendations for the length of the MSC program, duration of sessions, and number of group participants | Interviews | Delivery mode, format, and structure | - Day and time of sessions - Program and session length - Group composition - Group size |
| Focus groups | Delivery mode, format, and structure | - Accessibility of participation - Group connection - Group size - Number and length of sessions - Suggestions for adaptation |
Theme 1: strong desire for a disease-tailored MSC intervention that bolsters self-compassion and reduces lung cancer stigma
Across interviews, patients frequently expressed favorable views toward the MSC program, including the appeal of tailoring the intervention to the context of lung cancer:
I really hope this program becomes a reality…not just for myself but for a lot of people, I see the benefit of a program like this…Something that is directed towards cancer patients—and particularly lung cancer patients because I kind of feel like we’re the orphans of cancer. And I know it would have been beneficial to me because I couldn’t find anything that made me feel welcome in the lung cancer world. (Interview, female patient, African American, stage IIIB)
You’re saying in so many words, ‘give yourself a break’. Nobody’s perfect…don’t beat yourself up over it. I think it’s something that would be helpful. (Interview, male patient, non-Hispanic White, stage IV)
Participants reported strong interest in the components of MSC, highlighting that the emphasis on common humanity and the group-based format to facilitate interactions among lung cancer patients was particularly appealing:
That’s why I find it interesting...listening to those people in groups and see if their experiences are like mine. (Interview, female patient, non-Hispanic White, stage IV)
This program would be wonderful to hear all the different scenarios of different people that have lung cancer, so you can really relate to that. (Interview, female patient, Hispanic, stage IIIA)
The power of the [MSC] program comes through bringing people together and recognizing that the feelings that they have are not unique to them. (Focus Group, researcher).
Patients generally expressed strong motivation to participate in an adapted MSC program, and stakeholders universally endorsed the suitability of the MSC program as an intervention strategy reduce lung cancer stigma.
Theme 2: discussing lung cancer and stigma directly, but sensitively, in MSC sessions
In general, patients supported the idea of discussing lung cancer directly during intervention sessions and applying the MSC activities to cancer-specific challenges. However, patients also cautioned against bringing up lung cancer too frequently or without direct relevance to the MSC content:
It doesn’t have to be hammered upon, but it might be a real relief because you don’t spend time with other lung cancer patients. (Interview, female patient, non-Hispanic White, Stage I)
Some patients mentioned that they would expect for lung cancer to be discussed in an intervention that has been adapted specifically to reduce stigma among lung cancer patients:
If you told me it’s a lung cancer program, include the lung cancer. Nobody is going to be sitting [there] without lung cancer, so mention that. Don’t just add it because. Make it relatable to lung cancer. (Interview, female patient, Hispanic, stage IV)
The whole goal here is to help people who have lung cancer. I think you need to address that because that’s what this is all about. Otherwise, people will think…I don’t know, you’re trying to hide something. (Interview, male patient, non-Hispanic White, stage IV)
Patients and stakeholders generally agreed that the intervention should address stigma directly rather than implicitly. In one interview, a patient mentioned how it would be helpful to discuss experiences of stigma:
Interviewer: How would it feel…to openly acknowledge the stigma?
Participant: That would be good…I think it would be tremendously helpful because even, you know, somebody says…“I have lung cancer.” “Oh, did you smoke?” Like, really? It’s extremely upsetting. Because you’re trying to blame me for my cancer…I think it would be very helpful to bring that out in some of these classes. (Interview, female patient, non-Hispanic White, stage IV)
Additionally, stakeholders suggested that MSC manual adaptations to address stigma should include a combination of minor changes (e.g. mentioning stigma as an example within an existing activity) and major changes (e.g. adding new stigma-focused intervention content). One focus group participant highlighted the importance applying the MSC content directly to the experiences of lung cancer stigma:
If you are really interested in stigma as your primary outcome, I think an intervention that is overtly targeting stigma is your best chance...I wonder if you’d be targeting a primary outcome of general distress and less of stigma—especially internalized stigma—unless you are overtly adding some [stigma-focused] elements. (Focus Group, researcher)
Theme 3: tailoring MSC instructions to offer choices and promote engagement
The MSC instructions were generally understood clearly by patients, including those for each facet of self-compassion (mindfulness, common humanity, self-kindness). Patients noted that the instructions should generally be delivered simply, spaced slowly, and with enough time for invited questions to clarify concepts. These suggestions were made in acknowledgment of fatigue and cognitive difficulties that patients may be experiencing:
If there’s a way for you to actually…keep it simple. You probably have to cut it into small chunks. And if you’re doing this during treatment, a lot of people will probably have brain fog. (Interview, male patient, Asian, stage I)
If someone doesn’t understand something, as long as we have the opportunity to say ‘wait a minute- I’m not sure I get that. What are you trying to say here?’, I think it would be fine. (Interview, male patient, non-Hispanic White, stage IV)
Patients mentioned that the language within MSC activities should be carefully reviewed and modified as appropriate for sensitivity, given that certain words may prompt strong emotional reactions based on their connotations within the lung cancer context (e.g. suffering, journey) or misapplications to the cancer context (e.g. failure):
You used an interesting range of words: “difficulty”, “hardship”, “failure”, “suffering”. I think it’s interesting to distinguish hardship from failure…I think [failure] is really loaded—and “suffering” is too. (Interview, female patient, non-Hispanic White, stage I)
Participants from focus groups and interviews noted that MSC activities should offer multiple choices for participants to promote engagement, including modifications of movement-based activities and breath-focused meditations, given the associated mobility and respiratory challenges that lung cancer patients may experience during those exercises:
I was thinking about “affectionate breathing” practice. For a lot of people, breathing is very unfriendly. So I’m wondering about other ways of addressing the anchors (Focus group, clinician)
Asking you to breathe when you have lung cancer feels like a daunting task…I think it needs to be addressed that this could be triggering for some people. (Interview, female patient, Hispanic, stage IV)
I wonder about the walking and movement that maybe can be modified, because it might be something that may touch on limitations of patients. (Focus Group, clinician)
Theme 4: weighing the pros and cons of an in-person vs. remote delivery mode
There was disagreement about whether the program would be best delivered in person or via videoconferencing platform (e.g. Zoom), with interview and focus group participants noting distinct benefits and drawbacks to each delivery method. One the one hand, patients and stakeholders reflected how in-person delivery may enhance interpersonal group cohesion and facilitate participation:
I think I could listen better if I’m face-to-face than if I’m on Zoom. I think I’d speak more if I was face-to-face. (Interview, female patient, non-Hispanic White, stage IV)
There’s just something about that personal contact, shaking hands, hugging…things like that that are important. (Interview, male patient, non-Hispanic White, stage IV)
Teaching in person, there’s much more transparency because really being seen, really being felt, really being here—there’s no replacement for that. (Focus Group, clinician)
On the other hand, patients and stakeholders highlighted how remote delivery could facilitate ease of participation (e.g. reducing transportation burden), circumvent the risk of spreading respiratory viruses (e.g. COVID), extend reach across geographic locations, and enhances capacity to scale up a future iteration of the intervention for wider delivery:
It has to be Zoom. I don’t drive. So every single time I go to a visit, it costs me a lot of money. I’m also very cautious about going out, so I’d rather not do it as often. (Interview, female patient, Hispanic, stage IV)
I think people might be more prone to do it if it’s online because you feel like, alright, I’m in my home. I don’t have to hassle to get there. If I’m not feeling well… you know what I mean? I just feel like it’s easier to do it, easier for people who are sick. (Interview, female patient, non-Hispanic White, stage IV)
I was especially considering the heavy disease burden of lung cancer patients across the continuum, and also wanted to point out from a health-equity frame…making it remote via Zoom could be useful for people who work or people who don’t have childcare or transportation. (Focus Group, researcher).
Participants from both interviews and focus groups expressed ambivalence about these two modes of intervention delivery:
Zoom is easy because it’s in your home. There are limitations because I think it masks the nuances of body language and speech. I think you’re missing something. The likelihood of people showing up, honestly, at this point, I think is better through Zoom…so I think Zoom for the moment. (Interview, female patient, non-Hispanic White, stage IV)
I always feel eyeball to eyeball with humans next to you is the most efficient way. However, when you’re dealing with cancer patients, that’s not always so easy. It all depends…some people just can’t get around, and they would feel more comfortable [with Zoom]. (Interview, male patient, non-Hispanic White, stage IV)
Theme 5: recommendations for the length of the MSC program, duration of sessions, and number of group participants
There was widespread acceptance among patients for an intervention program of 8 weeks, with several participants mentioning that they would be willing to participate in an intervention longer than 8 weeks:
I don’t think eight weeks should be a problem. Eight weeks is not a long time. (Interview, male patient, non-Hispanic White, stage IIIA)
Additionally, patients and stakeholders generally agreed that 90-minute sessions (inclusive of breaks with invited movement and stretches) would be more feasible than the original 165-minute MSC sessions:
Two and a half hours to me sounds like a lot. I get a little restless after maybe an hour and a half. (Interview, male patient, non-Hispanic White, stage IV)
This last group I led—and people have all kinds of different cancers—people really attended pretty regularly. It was an hour-and-a-half. (Focus Group, Clinician)
Finally, patients and stakeholders reflected that a group size of 15 participants or fewer would facilitate interpersonal connections and be optimal for the intervention program:
I personally feel like I can connect better in smaller groups. I would want a range from 10 to 15. Larger than that would be difficult for me. This seems like something that’s potentially quite intimate. (Interview, female patient, non-Hispanic White, stage IV)
I think the optimal size group is 12 to 15 (Focus group, researcher)
The adapted intervention: Mindful Self-Compassion for Lung Cancer (MSC-LC)
Based on the identified themes, the research team made initial modifications to the MSC protocol to create an adapted version of MSC, which was named MSC-LC. The MSC-LC content was reviewed by a panel of 8 content experts, which resulted in subsequent minor modifications and one significant change: the addition of a session that focuses on stigma and shame. Changes at each step of this process are documented and detailed within the categories of the FRAME (see Online Appendix 2). The MSC-LC protocol was then reviewed and approved by the Center for Mindful Self-Compassion as an official adaptation of MSC. In sum, the MSC-LC adaptation includes shortened sessions (from 165 to 90 min), integration of cancer-specific examples throughout the practices, revised language to be more sensitive to the context of cancer, and an additional session focused on stigma and shame.
Discussion
This study identified key themes from semi-structured interviews with lung cancer patients and focus groups with expert clinicians and researchers that informed the development of MSC-LC—an adaptation of the MSC program that aims to bolster self-compassion and reduce stigma among adults diagnosed with lung cancer. Several themes emerged from the interviews and focus groups, including: (i) a strong preference among patients and stakeholders to adapt MSC for lung cancer; (ii) recommendations to discuss lung cancer and stigma directly but sensitively within the intervention sessions; (iii) suggestions for tailoring the wording of MSC materials to offer choices and promote engagement; (iv) ambivalence about whether the program should be delivered in-person or remotely; and (v) recommendations for the program to be 8 weeks (or longer) with 90-minute sessions and a group size of 15 participants (or fewer). This study identified core components of the MSC program to retain as well as key characteristics to modify in the adaptation process, which is important for maintaining fidelity to the goals of and identifying which intervention activities are theoretically relevant for reducing stigma [29].
Regarding affective motivation to engage in the intervention, lung cancer patients overall were highly motivated to participate in an adapted MSC intervention and endorsed favorable views toward the topics and components of MSC. Additionally, focus group participants reported that the MSC intervention has a high goodness-of-fit for targeting the reduction of stigma. Taken together, these findings highlight MSC as a promising intervention program to reduce lung cancer stigma, responsive to calls in the literature for such interventions [12]. Modifications to content were made to promote further motivation and engagement in response to participant feedback, including tailoring language for sensitivity, tailoring elements to be specific to lung cancer and stigma, adding elements specific to lung cancer stigma and shame, and removing elements that could be considered less sensitive to the cancer context (e.g. “how we cause ourselves unnecessary suffering”). Pilot testing is needed to determine acceptability and appropriateness of these modifications within the context of the intervention [36].
For cognitive-information processing, virtually all instructions were perceived as understandable, and interview participants were able to accurately paraphrase the core ideas after completing a sample intervention activity. Minor modifications were made to shorten the didactic components of the intervention and incorporate more pauses when participants could ask clarifying questions. Additionally, the integration of cancer-specific examples into MSC-LC exercises may facilitate cognitive-information processing among the intended audience [37].
When considering broader factors that might facilitate or hinder participation, participants highlighted how virtual intervention delivery could address anticipated barriers, including transportation/parking, disease burden, and caregiving responsibilities, consistent with barriers to supportive care identified among cancer patients broadly [28, 38]. Although there were noted strengths to an in-person delivery mode of MSC-LC, the research team recommended for MSC-LC to be conducted virtually to address these practical barriers and extend the reach of this program to underserved subpopulations [39]. However, in person delivery of MSC-LC may be considered for future implementation, depending on the contextual factors of the setting [40].
These findings contribute to the accumulating number of mindfulness-based interventions that are developed or adapted for cancer patient populations [41, 42] and may be useful in guiding the adaptation or implementation of other psychosocial interventions in cancer care settings [43]. Specifically, tailoring intervention elements to the context of cancer, adjustments of activities or instructions (particularly in response to disease-related challenges such as breathing or movement), and alignment of delivery mode with the intended audience’s needs might be beneficial modifications to consider for other supportive care programs. Additionally, systematic documentation of the modifications made to create MSC-LC contributes to efforts within implementation science to promote transparency for why, how, and what modifications are made when adapting evidence-based psychosocial interventions [31].
This study has important limitations. First, interviews were conducted with lung cancer patients from a single, NCI-designated comprehensive cancer center and proposed modifications reflect the experiences of these patients. As such, additional qualitative feedback about the MSC-LC program should be gathered during the pilot testing phase to determine whether additional modifications are needed to reflect the experiences of the broader patient population—including from individuals currently smoking. Additionally, individuals who participated in the interviews may have had a higher interest in the topic or perceived the MSC program more favorably than those who declined participation. Finally, our interviews were conducted only in English and no modifications were made to translate MSC-LC for those who speak other languages.
This study describes the process of creating MSC-LC—an official adaptation of MSC that intends to meet the needs and context of lung cancer patients and target the reduction of internalized stigma. This adaptation was informed by the diverse perspectives of lung cancer patients, oncology clinicians, expert MSC teachers, and psycho-oncology researchers; carefully documented in alignment with the criteria of the FRAME; and followed best practices from the CDC Map of Adaptation process. These systematic and rigorous methodological steps are important for creating a patient-centered adaptation that is responsive to the intended audience’s needs and preserves the fidelity and efficacy of the original intervention. Future research will test the acceptability, appropriateness, and efficacy of MSC-LC on patient outcomes and explore implementation processes such as whether a virtual delivery mode will enhance reach to underserved subpopulations.
Supplementary Material
Acknowledgments
The authors would like to thank Christopher Germer, Steven Hickman, and the Center for Mindful Self-Compassion for their advisory support and feedback throughout the adaptation process. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.
Contributor Information
Timothy J Williamson, Department of Psychological Science, Loyola Marymount University, Los Angeles, CA, USA; Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Whitney M Brymwitt, Department of Psychological Science, Loyola Marymount University, Los Angeles, CA, USA.
Jaime Gilliland, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Lisa Carter-Bawa, Cancer Prevention and Precision Control Institute, Center for Discovery & Innovation at Hackensack Meridian Health, Nutley, NJ, USA; Georgetown Lombardi Comprehensive Cancer Center, Washington, DC, USA.
Jun J Mao, Department of Integrative Medicine, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Kathleen A Lynch, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA; Department of Social and Behavioral Sciences, School of Global Public Health, New York University, New York, NY, USA.
Nicholas Emard, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Sarah Omachi, Department of Psychological Science, Loyola Marymount University, Los Angeles, CA, USA.
Rocky L Jacobs, Department of Psychological Science, Loyola Marymount University, Los Angeles, CA, USA.
Metasebiya Y Tefera, Department of Psychological Science, Loyola Marymount University, Los Angeles, CA, USA.
McKenzie T Reese, Department of Psychological Science, Loyola Marymount University, Los Angeles, CA, USA.
Jamie S Ostroff, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Funding Sources
This work was financially supported in part by grants from the National Cancer Institute (K99CA256351; R00CA256351; R00CA256351-S1; P30CA008748). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Conflicts of Interest
The authors declare that they have no conflict of interest.
Author Contributions
Timothy J. Williamson (Conceptualization, Data curation, Methodology, Investigation, Formal analysis, Project administration, Resources, Supervision, Writing—original draft, Writing—review and editing), Whitney M. Brymwitt (Formal analysis, Writing—original draft, Writing—review and editing), Jaime Gilliland (Formal analysis, Writing—review and editing), Lisa Carter-Bawa (Conceptualization, Methodology, Resources, Supervision, Writing—review and editing), Jun J. Mao (Conceptualization, Methodology, Supervision, Writing—review and editing), Kathleen A. Lynch (Conceptualization, Methodology, Writing—review and editing), Nicholas Emard (Investigation, Formal analysis, Writing—review and editing), Sarah Omachi (Writing—original draft, Writing—review and editing), Rocky L. Jacobs (Writing—original draft, Writing—review and editing), Metasebiya Y. Tefera (Writing—original draft, Writing—review and editing), McKenzie T. Reese (Writing—original draft, Writing—review and editing), Jamie Ostroff (Conceptualization, Methodology, Resources, Supervision, Writing—review and editing)
Human Rights
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed Consent
In accordance with institutional IRB standards, verbal agreement was obtained and documented from all individual participants in the study.
Welfare of Animals
This article does not contain any studies with animals performed by any of the authors.
Transparency Statements
This study was not formally registered. The analysis plan was not formally pre-registered. De-identified data from this study are not available in a public archive. De-identified data from this study will be made available (as allowable according to the institutional IRB standards) by emailing the corresponding author. There is not analytic code associated with this study. Some of the materials used to conduct the study are available in a public archive: https://osf.io/dwfjk/
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