N = 19) in Iqaluit, Nunavut (2017–2018). Women’s reflections on the sessions, and the significance of sewing to Inuit, were integrated with researchers’ critical reflections to examine the value of sewing as a strategy for arts-based inquiry within a focus group method: results related to the flexibility of the sessions; how collective sewing created space for voicing, sharing, and relating; sewing as a tactile and place-specific practice tied to Inuit knowledge and tradition; and lessons learned. Our results underscore the possibilities of arts-based approaches, such as sewing, to enhance data gathering within a focus group method and to contribute to more locally appropriate, place-based methods for Indigenous health research.In this article, we present a case study of sewing as a strategy for arts-based inquiry in health research, situated within a broader project that highlighted Nunavut Inuit women’s childbirth experiences. Five focus groups were hosted as sewing sessions with pregnant women ( Sewing is part of our tradition, our culture. It gives a warm welcoming into the group. It really puts your mind focused on our group. It’s grounding. Once you start sewing, you forget about everything around you. Like being out on the land. You get away from technology, you get away from everything. Like out on the land—you get away from reality, and you receive what the land has to offer you, what the animals in the water are. You see a seal, and it’s swimming very calmly, smoothly in the water when you see it. It’s nothing chaotic out there. It’s very peaceful. You don’t hear the city. You don’t hear anything. All you hear is the motor of the boat. Or the sound of the skidoo. Or the snow. It’s just a real peaceful state, your entire body and soul is feeling around you. That’s how it feels also with sewing. ’Cause you’re keeping the tradition going, you have all these different reasons to be motivated to be able to participate in these sewing groups. Not only that, you feel proud in the end of your accomplishment. It’s such a satisfying feeling of emotion that, “Oh, I finished this! It’s going to be useful. It’s going to be used and kept warm.” Something you can provide for your family. Arts-based approaches are increasingly emergent in health research and practice as creative, engaging, and empowering means to explore participants’ lived experiences of health issues, perspectives on health systems, and concepts of health . ResearcImportantly, when working with Indigenous communities and with Indigenous Peoples, We explore the methodological possibilities and value of arts-based inquiry in health research through a case study on maternal health in Iqaluit, Nunavut. Specifically, this article (a) critically analyzes the process of using sewing as a strategy for arts-based inquiry to enhance focus groups with pregnant Inuit women in Iqaluit, (b) explores sewing as a strategy for arts-based inquiry that is embedded in Nunavut Inuit culture and context, and (c) evaluates the use of sewing as a strategy for arts-based inquiry in an Indigenous health context and identifies key “lessons learned” that have relevance to researchers who may employ this strategy. In so doing, we draw connections from our research process to the broader context of critical public health research and praxis, particularly with Indigenous populations.2 of lands and waters that Inuit have lived on and with for thousands of years estation . While aestation , unless estation . Over thestation —a medicaestation . Inuit hestation .Inuit have fulsome knowledge of birth-in-place; just as Inuit know and are of the land, so too are Inuit birthing practices intimately tied to place .As the rThis research project was guided by principles of community-based research , namely,The research process consisted of four broad steps, including recruitment (gathering the group), data collection (gathering the data with a focus group method), language interpretation and data transcription, and data analysis. Sewing was a strategy for arts-based inquiry that facilitated and enhanced the data collection component of the research.The sewing sessions were facilitated by a female Inuk team member from Iqaluit and a female Settler PhD candidate. Two other female Inuit research associates and one Settler research associate were each involved in one session and helped with logistical preparations, including recruitment for one session hosted with women living in Iqaluit. For recruitment for the other four sessions, pregnant women currently residing at the Tammaativvik Boarding Home were personally invited and informed of the time and location of the sessions, and given the option of whether or not to attend. A range of two to seven pregnant women voluntarily attended and actively participated in each session . The composition of each group was fluid: Not all women stayed for the full 3-hour duration of each afternoon of sewing, as they sometimes had appointments to attend . ParticiQammaq (Gathering Place) with pregnant women who regularly lived in Iqaluit . The Inuktitut portions of the recordings were interpreted into English and subsequently transcribed and integrated among the English portions. To account for the challenge of interpreting Inuktitut concepts, and the potential for meaning to be lost, this process also involved a thorough debrief between team members. An Inuk team member interpreted to provide additional clarity and context to the recorded audio . This apAnalysis of these qualitative data was a multilayered process that consisted of weaving together data from sewing sessions and interview transcripts, as well as annotations, memos, and written reflections from the team members, who critically reflected on and debriefed the sewing strategy in relation to the data gathered and the nuances of nonverbal cues, silence, facial expressions, and vocal tone and inflection in the audio recordings . InitialThe use of sewing as a strategy for arts-based inquiry in an Indigenous health context more broadly (Obj.3)—and as a strategy for inquiry embedded in Nunavut Inuit culture in particular (Obj.2)—was examined through the lens of literature (both Inuit-specific scholarship and broader Indigenous scholarship) and the data. This literature can relate to three general categories, which provided theoretical framing to, and helped to generate and refine, themes from the data. Several results map directly onto these categories:Relationality and kinship:Voicing and storytelling:Knowing (and sharing) from “doing”: Creating research by “doing” (Inuit Qaujimajatuqangit (IQ) and Inuit ways of knowing  together outside of the sewing sessions.The sewing sessions created new relationships both between and among participants and also between and among participants and local team members, who offered to take women berry picking and accompanied several women on a post-sewing group trip to a fabric store in town. Preexisting relationships were identified between participants, as women often discovered common friends or kinship relations. “That’s my [insert family member]’s [relation]” was a commonly echoed refrain around the room. While interpreting some Inuktitut conversation, a team member described what was happening as “talking about how they’re related, and not strangers with each other.” These relational ties were expressed by one woman’s escort as likely to shape the boarding home experience that ensues, as “now that they’ve met each other, they won’t feel so much as strangers to each other in the boarding home . . . It’s a lot better.” Sewing together was observed to be generative of connections to carry forward beyond the session. Sewing as a strategy for arts-based inquiry, then, involved women gathering and having time and space to relate. After meeting and sewing together, even local team members discussed making “Keeping our tradition going” or a living of Inuit tradition—these were ways women described what sewing was to them. In the context of sewing together, women shared the rich traditions Inuit have around sewing, and the depth and breadth of knowledge Elders have about sewing. It was discussed as a highly developed art, associated with much skill and technicality, and for which there exist knowledge holders in Inuit communities. Women discussed differences in sewing techniques from one community to another, as well as across regions and territories in Inuit Nunangat. Just as Qikiqtaaluk Region communities are diverse, so also are the expressions of sewing, according to participants. The patterns created, used, and passed among Inuit and generationally, as well as the styles and types of sewing projects, were discussed as reflecting a particularity to place and people. In the context of the sewing groups, women also shared patterns and practices, asked sewing questions, and taught one another. Sewing, then, was described and enacted as a way to teach and carry on Inuit culture, and embody Inuit knowledge and traditions. Women expressed enthusiasm for this collective learning, for—as one participant shared—“I’m glad I came. It’s gonna motivate me to make an amauti!”In addition to the significance of sewing to Inuit women, and what sewing together facilitated in the research process, this study also revealed some “lessons learned” . These oAt times, conversation appeared stilted by what a Settler team member perceived as a benign question from her cultural lens. Conversely, other questions she considered surface-level elicited unexpectedly rich responses. Upon reflection, we noted the critical place of partnership in this research—and, perhaps, more broadly in research that crosses cultural, socioeconomic, and Indigenous-Settler bounds . Indeed,Throughout the sessions, a Settler team member questioned how power existed, the effects it had on the process, and how she might creatively engage the power imbued in her social identity and redress power imbalances . ImportaBeyond language, a team member’s positionality as a White Settler academic researcher also created multiple, interrelated, and reinforcing gradients along which power affected interactions with participants. She was also not skilled in the act of sewing nor a mother—two facets for which she was evidently not “expert” and instead positioned as learner . ParticiSome of these women haven’t sewn before. I want our tradition alive as long as possible. ’Cause our ancestors survived without all the equipment we have today. They survived on just the land. They carved needles, they made ulus. I feel spoiled today because we have sewing machines, we have needles, we have all these things to make it easier for us. Our ancestors would have been proud, if they’d see what I can make today and provide for everyone. And that’s a big part of who we are as Inuit. It identifies how powerful our ancestors were. And not only that, whatever we create, it becomes beautiful! That’s what encourages me in passing it on, ’cause if you practice, you’ll only get better each time you try. I want these women to represent our culture, and only get better through practice. As illustrated by these results, sewing as a strategy for arts-based inquiry has broader applicability to other contexts, due to its flexible and tactile nature, and in how it creates space for voicing and sharing, as well as connection among participants. Importantly, these results can be situated among literature on intersecting and interrelated “projects” that Indigenous communities are engaged in, outlined by The Hands’ Measure, The use of sewing as a strategy for arts-based inquiry was engaging for women. The research method itself—not just any future outcome or output—was identified as meaningful for participants, as it resonated with cultural values and locally specific forms of communicating and knowledge-sharing . In The Pilimmaksarniq, Inuit value practicing and honing skills, such as sewing, which contribute to family and community life and wellness . Thus, sewing as a strategy for arts-based inquiry aligns with an Inuit epistemological, as well as ontological, framework of coming to know and be through making and doing . Likewise, community sewing programs, such as that of the Rankin Inlet Friendship Centre  and throOur case study of sewing also fits within a broad spectrum of arts-based health research approaches that are increasingly, and regularly, utilized in other research contexts. For instance, body mapping and drama are used as an arts-based sexual health intervention and method to facilitate data collection in the Northwest Territories . RelatedThus, sewing is but one example of a strategy for arts-based inquiry that may contribute to a decolonizing research agenda beyond an Inuit context. As there was no structured interview guide used in the sewing sessions, women were freer to share on their own terms, when and if they felt comfortable doing so. Overall, the design was flexible and adaptable; it was iteratively created as the research team debriefed what went well and implemented changes for subsequent sessions to facilitate further opportunities for women to share in ways that resonated with them. doing. Thus, our case study of sewing with Inuit women in Iqaluit, Nunavut, more broadly illustrates the potential of arts-based inquiry to resonate with local ways of knowing and being in the context of health research with other Indigenous populations, thereby situating research to respond more effectively to a decolonizing research agenda.This study illustrates that, in light of calls for Inuit-led and Inuit-directed research , strateg


Fibromyalgia syndrome (FMS) is characterized by generalized chronic musculoskeletal pain, fatigue, and sleep disturbance, as well as cognitive, somatic, and other symptoms. Most people affected by FMS are women, and studies analyzing this condition in men are scarce. In this study, we discuss the physical and psychological symptoms of FMS in men, analyze the possible side effects of pharmacological therapies, and explore the impact of the illness comparing these results between the different classification groups according to sociodemographic variables . We used a sequential exploratory mixed method (MM). Qualitative information was obtained from two focus groups (n = 10). Structured questionnaires were administered to 23 men affected by FMS. The mean age of the participants was 51.7 years (SD = 9.64). The most common drugs used were antidepressants and anxiolytics (86.9%), followed by non-steroidal anti-inflammatory drugs (82.6%) and opioids (60.9%). Current level of pain was high , while perceived health and satisfaction with pharmacological treatments were low . The impact of FMS measured using the Fibromyalgia Impact Questionnaire (FIQ) was very high at 88.7 (SD = 8.2). Six categories related with symptoms and side effects of the medication were observed in the qualitative data: (1) main physical symptoms, (2) mood disorders, (3) insomnia and non-restorative sleep, (4) cognitive disturbance, (5) hypersensitivity, and (6) symptoms secondary to opioids. Pain and fatigue were the symptoms most often mentioned by the participants . Other important symptoms were anxiety, depression, and memory and sleep disorders. The consumption of opioids causes further unwanted symptoms such as drowsiness and dependence, which makes it difficult for patients to perform basic everyday activities. We believe it is vitally important to continue investigating this symptomatology in order to improve diagnosis and treatment for these patients. Fibromyalgia syndrome (FMS) is characterized by chronic pain, fatigue, insomnia, cognitive dysfunction, mental health disorders, and other symptoms . As the The prevalence of FMS ranges from 2% to 6% of the world’s population ,4. The cThe aim of treatment, which is not curative, is to reduce symptoms and afford the patient greater functionality . Given tAnother important aspect is the strong predominance of female patients, who represent 80–96% of all FMS patients ,4. SinceStudies comparing the symptomatology of women and men with FMS report that men are less sensitive to pain and have fewer tender points ,11,12,13Studies focusing entirely on the symptomatology and experiences of men with FMS are scarce. In relation to walking ability, Heredia-Jimenez and Soto-Hermoso  reportedTaking into account the limited evidence provided by clinical manifestations of men with FMS, in this study, we aim to examine the physical and psychological symptoms of FMS in men, analyze the possible side effects of pharmacological therapies, and explore the impact of the illness, comparing the results between different sociodemographic groups .We used the sequential exploratory mixed method whose central component is qualitative methodology. Qualitative data are collected and analyzed first, followed by quantitative data, which are used primarily to augment qualitative data. Data analysis is connected, and integration occurs in the data interpretation stage and in the discussion . For theThe type of sampling used was non-probabilistic or purposive . All menSubsequently, for the quantitative phase, the selection criteria were the same as the qualitative phase. We could obtain 13 more men  from the same list. No participant dropped out of the study. All participants signed an informed consent form, a participant information sheet, and a voice-recording consent and release form.“What physical and mental symptoms cause you to experience this illness in your body?”“What difficulties do you encounter?” “What causes this difficulty? Fatigue, pain or other symptoms?”“You mentioned that you wake up tired. Don’t you feel better in the morning after sleeping?”“What medicines do you take?” “Do you feel any side effects from taking those medicines?”Focus groups were used. Unlike semi-structured interviews, this method uses group interaction as a direct data collection method . Two focThe sessions were led by two authors of this study, both of whom are healthcare professionals. The first author is a Ph.D. student and the last is a Ph.D. supervisor, an expert in qualitative analysis. Each session was audio-recorded. The audio files were password-protected and professionally transcribed verbatim by the first and the last authors. Data collection ended when data saturation was achieved.The transcriptions were examined using content analysis and inductive coding . The firAn ad hoc questionnaire was used between March and May 2018 to obtain the participants’ sociodemographic data. The variables used in the questionnaire were age, marital status, place of residence, nationality, educational level, employment status, and number of people living in their home. The questionnaire also included the patients’ perceived levels of support , pain , and health , as well as the pharmacological therapies used and the patients’ level of satisfaction with their treatment . No analysis of validation, consistency, etc., was performed and we consider that, due to the type of information required, it was not necessary.The Fibromyalgia Impact Questionnaire (FIQ) was used to analyze the impact of the illness. This questionnaire is widely used in the healthcare field  to assesA descriptive analysis of frequencies and percentages was conducted to reflect the participants’ sociodemographic variables and pharmacological treatments. For continuous variables, a descriptive analysis was performed using mean, standard deviation, maximum, median, and minimum. p < 0.05. Non-parametric tests are based on measures of sample position and not on statistical parameters and are therefore less sensitive to outliers.To detect statistically significant differences in the score of the FIQ according to the categorical variables, the non-parametric tests of the Mann–Whitney (two groups) and Kruskal–Wallis (multiple groups) were used. Statistical significance for these tests was set at In the case of normality of variables, the results of parametric and non-parametric tests are similar. In the case of non-normality, the results of the non-parametric tests are more reliable. For “small” samples, these nonparametric tests are more robust. The data were collected and refined using a Microsoft Office Excel spreadsheet. Statistical analysis was conducted using IBM SPSS Statistics v.23.0.From the transcriptions of the sessions with the focus groups, we coded six categories and 23 subcategories available in The participants explained in great detail many of the signs and symptoms caused by FMS but expressed special concern with regard to pain and fatigue. They described their pain as continuous, “a constant struggle” and present “all year round”. Some men also described it as a stabbing pain, “like a heart attack” or “like a sword” (P1). They also described it as generalized and unbearable, to the point of wanting to “hit myself against the wall” . The pain fluctuated in the sense that it was present in different parts of the body, sometimes started in one area and moved to another, and was sometimes present in different areas at the same time.Fatigue was described as continuous and a daily presence in their lives. Some explained that it appeared early in the morning and did not go away even with rest: “you just wake up tired” (P4). The fatigue was also said to limit their activity, like a battery that is running out, and that it worsened with movement, conditioning simple actions such as “peeling potatoes and having to take breaks to be able to finish the job” (P1). Others said they could not even hold objects in their hands. They had to manage their fatigue well and give priority to certain actions. “(…) I sit down and think, what am I going to do today? My life revolves around seconds because you don’t know what you’re going to find next…” (P8).The participants described their experiences with anxiety and depression. They attributed their anxiety to a large extent to the uncertainty they experienced before receiving their diagnosis: “(…) the doctors tell you that you’re somaticizing. I suffer from anxiety because I’ve had pain and been taking tests for years” (P3). Failed diagnoses and a lack of empathy displayed by some health professionals as well as by their family and friends have had a negative impact on the mental health of these patients: “People laughed at me and thought I was making it up” (P5). Their constant pain has generated anxiety and led to depression: “Having to put up with so much pain makes you feel depressed” (P3). Depression has also led them to hit rock bottom and to think of suicide: “I’ve wanted to commit suicide, but I haven’t done so for the sake of my daughter” (P10).Most participants do not sleep or rest very well, which they associate above all with their pain and anxiety. Some, for example, explained that they “would wake up in the middle of the night with panic attacks” (P5), while others could not fall asleep because of their “obsessive thoughts” (P3). Lack of sleep also altered their personality because they grow angry more often about things that had never affected them before: “(...) you’re in a bad mood and when you’ve had enough, you get angry with people; they tell you you’ve changed, that you get upset at the slightest things” (P6). With regard to pharmacotherapy, the participants explained that they take sleeping pills to get to sleep: “I couldn’t get any rest until they prescribed me some strong sleeping pills” (P9). They also take anxiolytics with hypnotic effects: “I take diazepam  to get to sleep; I couldn’t get to sleep without it” (P1).Another symptom mentioned by participants at the focus group sessions was memory impairment. They reported having a poorer memory and feeling more forgetful, especially as the illness progressed: “I forget about things a lot” (P8). Some participants at the sessions could not remember what they wanted to say when it was their turn to speak. Others said they had difficulty expressing themselves verbally and that this may have been caused by their mixing and consuming a range of different drugs.All participants reported having some form of hypersensitivity. With regard to auditory hypersensitivity, for example, one participant reported that his eardrums “pierced” (P4) whenever he heard low-pitched noises, while another explained that he appreciated silence much more than he had before. Others described their hypersensitivity in more temperature-related terms. Some were affected by changes in temperature, while others could not stand the summer heat because it exacerbated their fatigue. Some complained that air conditioning intensified their pain or that they had to keep out of the sun because they burned easily. Others said they could not speak in cold weather because it made their tongues feel all prickly. They also reported being hypersensitive to chemical odors such as colognes and lacquers, which made them feel nauseous or dizzy or gave them headaches: “I avoid the perfume aisles in supermarkets” (P5).Many participants reported that although they felt their drugs were effective, they were unsure whether to take them because they led to unwanted side effects such as dependence, impaired daily functionality, or interaction with other substances such as alcohol. Although highly effective, powerful painkillers such as opioids led to feelings of “drowsiness” or “extreme relaxation” that made it impossible for them to lead their normal daily lives: “Strong medicines make you feel sleepy and you can’t lead a normal life or do the things you need to do for yourself” (P9); “I’ve even picked the girls up from school when I’ve been drugged up with morphine.” (P1). The same participant recognized that morphine only served to hide his pain: “It took me two years to get off morphine; I didn’t want to end up taking methadone, it just didn’t make any sense” (P1). Another major side effect, therefore, is dependency. Some men were very sincere: “I’m hooked on opioids and I can’t stop taking them” (P7). One participant explained that he always carried some “candy” with him. Others reported they had stopped taking medication for a while but ended up re-taking it because they could not cope with the pain.The sociodemographic data of the 23 participants are shown in The results of the FIQ questionnaire  show thaOn average, the ability of the participants to work was scored as 7.4 (SD = 2.9). Due to their condition, they lost 3.8 days a week for work or tasks (SD = 2.6) and only felt well 1 day (SD = 1.8). The impact of the disease for all participants was very high, while the mean for the FIQ as a whole was M = 88.7 (SD = 8.2).Individually, the greatest impact was reported by participant number 4 , who was divorced, perceived a poor level of family support (4/10), had completed secondary education, was unemployed due to a disability, and consumed opioids. The least impact was reported by participant number 9 . Although the profile of this participant was similar to participant number 4′s, he was younger and married, had better perceived family support (10/10), and did not consume opioids.The results obtained through the mixed method suggest that the most common physical symptoms of our participants were pain and fatigue, which caused difficulties in activities of daily living (ADL). Anxiety and depression were also very present. Despite consuming mainly anxiolytics, antidepressants, and strong analgesics, the men were not satisfied with pharmacological treatment. In summary, there is a high impact of the disease on participants of the study.Our quantitative results depicted participants as middle-aged men (51.7 years), as are the vast majority of studies in men with FMS, which reveal young participants with mean ages of 37 , 45 18]18], 47 ,25, 48 , and 52 Regarding pharmacological treatment, our results agree with Rivera et al. , who staIn summary, patients with FMS in Spain are overtreated with a combination of pharmacological therapies that lack adequate support from clinical practice guidelines, and some drugs that have not been shown to be effective and are harmful in the long term, such as major opioids, benzodiazepines, and NSAIDs, should be dispensed with ,35. ThisQualitative results, on the other hand, revealed that pain and fatigue were the clinical manifestations most often mentioned by the participants . Pain, wOur findings suggest that fatigue is a symptom that strongly limits every aspect of patients’ lives. It fluctuates throughout the day and across all four seasons. Fatigue is compared to a battery gradually running out with every passing hour. Simple activities such as cooking or using a screwdriver are big problems because they have to take constant rests when performing any kind of task. They also mentioned that their fatigue is cumulative and does not subside completely with rest . It is iAnother important symptom in patients with FMS is sleep disorder. As in a study of women affected by FMS and healthy control groups , particiParticipants in the present study also expressed special concern for memory impairment and cognitive dysfunction, also known as “fibrofog” . Our datFMS is grouped with other diseases as one of the Central Sensitization Syndromes . These rFinally, we observed that participants in the present study suffer from symptoms secondary to the drugs they take, especially opioids. The use of opioids for pain management in FMS is not recommended by any current clinical guidelines . The menIn short, men with FMS are people who suffer from a chronic disease at a very early age, suffering numerous physical and mental symptoms that make it impossible to work or carry out basic life activities. Their pharmacological treatment is unsatisfactory, and they take drugs that are not recommended by clinical guidelines because they are ineffective or cause serious side effects. These findings show an important deficiency in the lack of research in relation to FMS, as well as a lack of male participants, lack of knowledge of FMS symptomatology in relation to men, and lack of effective and safe treatment.This study has limitations. The sample size is small. This reduces the variability in the sample composition, limits generalization, and reduces statistical power for quantitative analyses. A greater number of participants may have increased sample diversity and have added new perspectives to the discussion. It should be noted, however, that this study has a larger and more diverse sample than many other studies that are currently available and it does capitalize on a mixed-methods approach. Another important limitation is that the data are entirely patient-reported, which may result in under- or over-reporting. Despite the limits of this study, our results show that it is extremely important to continue investigating this subject to better understand the sociodemographic and clinical characteristics and perceptions of these patients. This study may be particularly useful in the public or community healthcare fields to help boost the visibility and recognition of male FMS patients, and in private healthcare, it could be an effective way to organize the future service of the providers.


From their analysis and the respective importance of variables (model weights), they conclude that subjects with a history of maltreatment display specific alterations in cortical surface area and thickness of multiple brain regions.Using machine learning, Price et al.  aim to uCrucially – in addition to the cortical and subcortical brain variables – the authors include “non-brain” variables, namely socioeconomic status, cognitive functioning, psychopathology, as well as age, gender, and the scanning site as features in their machine learning model. We argue that their results (1) do not provide any information regarding the unique association of brain structure and childhood maltreatment and 2) are likely due to generally well-known associations between clinical variables and childhood maltreatment. Notably, a study referenced by Price et al. used a similar statistical approach and thus suffers from the same issues outlined below [ are likeSpecifically, once these “non-brain” variables are added to the predictive model, the performance of a model based on brain data alone simply cannot be determined anymore. The reason for this arises from the nature of multivariate models in general: As all weights are jointly estimated, every additional variable may change all other weights already in the model. Thus, the authors’ analysis is uninformative with regard to the unique contribution of brain variables whenever a single “non-brain” variable is present in the model. Drawing a subset of variables multiple times as done by the authors does not change this fact if a single non-brain variable remains in the drawn feature set. This so-called Rashomon effect is well-known in statistics .Secondly, the authors interpret multivariate weights as if they were univariate associations. Importantly, however, a large weight does not imply a strong association with maltreatment in this context. For example, even a variable without any association may receive a large weight if it explains error variance in other variables completely independent of maltreatment (cf. Suppression Effect in Capraro and Capraro ). Thus, Third, the relatively good model performance found by the authors is most likely based on the known association between clinical variables and childhood maltreatment. As it can be safely assumed that psychopathology and socioeconomic status are highly associated with a history of childhood maltreatment , model pFinally, the authors also include scanner site, age, and gender in their model, variables classically controlled for in statistical inference. In this study, however, they are explicitly used to predict maltreatment experience. As at least scanner site and age receive non-zero weights, we can be sure that model performance is at least in part driven by these confounding variables.brain variables only still displays similar performance. As this does not control for the effect of confounding variables, consistent results would need to be shown across scanner site, age, and gender as well.Despite these fundamental problems, a remedy is simple: As suggested for example by Yarkoni and Westfall , one canOpen Access funding enabled and organized by Projekt DEAL. This work was supported by grants from the Interdisciplinary Center for Clinical Research (IZKF) of the medical faculty of Münster (grant Dan3/012/17 to UD) and the German Research Foundation . The authors declare no competing interests.


While there is growing evidence for resilience building programmes, to date research has not explored how professionals construct understanding of programme impact. RISE , a 5-day yoga-based retreat programme, has been linked with positive wellness outcomes. This qualitative inquiry explores participants' reflection and experience 3 months after programme completion.Through a grounded constructivist lens, in-depth semi-structured phone interviews were conducted with 17 adult professionals in high-stress work environments who attended RISE. Initial hand-coding informed codebook development for systematic coding using directed content analysis using sensitizing structuring.Two integrated perceptions woven through five themes. Persistent threads of experiential learning and sense of permission provided structure for themes found. Five interrelated themes related to psychological health and workplace dynamics were (1) use of acquired behavioural skills and practices; (2) lived mindfulness; (3) resilience to stress and emotion regulation (4) self-care and self-compassion, and (5) sharing with others.Findings provide meaningful interpretation of previously reported programme efficacy by contextualizing perceived benefits within participants' constructed understanding of change. Specifically, environmental, social, and experiential considerations have suggested implications for resilience building programmes.Abbreviations: RISE  Professionals who work closely with at-risk, vulnerable, or dangerous populations in a specialized area such as education, health care, or social services, and are exposed to high stress scenarios and greater risk for developing burnout, disease, and mortality , was developed for and offered to frontline professionals. Help at Kripalu Center for Yoga and Health, the programme improves psychological health and wellbeing in frontline professionals, including mindfulness, resilience, empowerment, self-compassion, and affect, with most improvements persisting up to 2 months following the programme , body scan, mindful communication, and a focus on healthy behaviours concerning physical activity, nutrition, and sleep. Curriculum elements included yoga sequences, sitting meditation, breathing practices, and education sessions. Educational material included mindful communication didactic exercises; sleep information and preparation for mindful wind-down; and eating in mindful healthy ways. The RISE programme is described in extensive detail in the quantitative publication  specializes in qualitative inquiry/incorporation and has extensive experience with in-depth interviews as well as RISE programme material. To emphasize a shared perspective and allow for reflexive and in-depth inquiry, the interviewees were made aware of the interviewers’ position both as an independent researcher and someone who had attended Kripalu yoga-based programmes.Of the selected cohort of 64, RISE programme participants were invited to participate in the interview, 17 programme attendees agreed to and completed the interview (26.6% of attendees). Participants (n = 17) were 94.1% female and 5.9% male with a mean age of 40.3 years (25–65). Interview participants represented a similar sample of professions as RISE participants including social service workers, first responders, and inner-city youth programme directors.Phone-interviews were transcribed verbatim and coded using initial hand coding and secondary NVivo qualitative analysis software, version 10  use of acquired behavioural skills and practices; (2) lived mindfulness; (3) resilience to stress and emotion regulation; (4) self-care and self-compassion; and (5) sharing with others. These themes are explored in detail below.Pursuant to the second aim, participants’ reflections of their experience were reviewed for valance. Accounts of experience at RISE were positive, commonly citing the retreat experience as transformational. Participants offered layered narratives of learning and growth. For example, one participant described the retreat as reflective time for somatic awareness immediately linking it to motor ability. Inferring that RISE impacted physical and somatic wellness she said: “the quiet walks, the quiet breakfasts, you know, learning how to feel that energy within my body. From the day I got there I had to sit on the chair to when I left I could actually to sit down on the floor with everyone.”  While common themes are detailed further, it should be noted that the experiential nature of the data. Participants referenced an integrative experience of wellness learning, often citing food and lodging. For example, “but to actually experience it and learn about different spices, and to you know just to see like, ‘Oh wow, I can get this in my community, I’ve seen it, I didn’t know what to do with it. I didn't know what it tastes like,’ you know, to have that exposure, made a tremendous amount of difference, and then the experience of the quiet breakfast, you know” . In addition, evidence of the wellness outcomes of the curriculum is displayed by reported use of explicit teachings.use of acquired behavioural skills and practice, lived mindfulness, and resilience to stress and emotion regulation support the explicit impact of the RISE program. Participants shared changes in behaviours perceived to be a result of the program. Specifically, self-care and self-compassion as well as sharing with others the practices, constructs and experiences with others were reported across interviews. Themes of I [was] very quick to react. But now I’m learning how to breathe in response. … are some situations that I have to react to, but taking that step, you know, breathing, holding a belly breath, releasing it to the top of my lungs. You know, it’s completely, [a] completely different outcome. Reflection on the RISE programme offered varying usable tools and resources replicated after programme completion. Participants reported continued use of inner resources/tools to promote their own wellbeing, commonly citing the tools as a formative effect of the programme. For example, while stating the impact of the programme one participant described: “Honestly the tools, like the breath, the things that focus and get us back to the present has been the most useful, because once I’m focused and present in my situation and body, I can see the future in a more doable way” . Many participants described situations that suggest transformation through use of tools that were learned in the programme. For example, one participant discussed improved stress reaction, or emotion regulation, through using breathing tools:It should be noted that these expressions of acquired behavioural skills and practice are directly related to specific content in the curricula. Therefore, these expressions should not be perceived as naturally emerging from the experience rather reflective of the tools that first came to participants' minds 3 months after the retreat. As tools were embedded in the RISE curriculum, frequency counts were used to evaluate the scope and weight of explicitly taught items. Participants described mindfulness within experiences of moments. Mindfulness in day-to-day life was described as experiencing, rather than performing, tools of objective awareness of both mind and body. This distinction of lived mindfulness emerged as a persistent component distinguished from typical mindfulness discussion. Accounts of mindfulness were made as descriptive skill use, related to reports of transformation, empowerment, and/or improved communication. For example, one participant states “ … becoming aware of my breath makes me able to become more present and aware of like my body and what the actual reality is as opposed to. Like you know. Whatever fears and things like that are just being generated from a busy mind.” . This integrated account describes an experience of mindfulness as well as a demonstration/performance of mindfulness.My [habit of] not being present was a way of avoiding things. So, I think like it’s empowering to imagine that like “Oh, that I can actually be here while this unpleasant thing is happening, and I can survive it, and I can-” You know, it gives you a sense of accomplishment to be able to deal with something and actually deal with it. The transformative quality of lived mindfulness was often discussed. For example, “… for the first time I realize how much I am running and going from thing to thing without really thinking about what I’m doing”  and “I really feel like my life has changed a lot. You know, from small little things, like when I go and take a walk, you know, noticing things, the sounds, and the smells, and the sensations, which I never really did before.” . Others elaborated on a sense of expressed empowerment as one participant illustrated:I’m able to slow myself down and be completely present to the person I’m supervising, and I deliberately do that instead of kinda feeling all of my responsibilities, I’m able to just narrow down my focus to the person who I am talking to and just doing that consciously makes a huge difference first of all in how I feel about the conversation and also the effectiveness of the conversation. These frontline professionals expressed poignant transformation related to their improved ability to communicate in seemingly stressful interactions. For example, one participant perceived her own mindfulness as influencing the social sphere around her saying “ … It's kinda like an instant reset when I am mindful and focused and present in that way, the other person kinda responds by settling down also.” . Participants shared that as behavioural health professionals this helped them in leadership and communication, as one participant explains:Further expressions of transformation were reported through participant reports of increased resilience. In particular, resilience was connected to ability to cope because of decreased levels of stress. Specifically, participants suggested an ability to recover quickly during challenging moments. There was a range of situated stress from small stressors as one participant describes; “Things don't bother me as much. Like, even if I’m running 5 minutes late, it’s, you know, taking a few breaths and saying, like you know, “A week from now, it’s not going to be a big deal that I was 5 minutes late” , to potentially traumatic stressors as another participant describes; “When I realized [a gunshot I heard] was close to me physically, it was three blocks away. I … my first response was to open that [mindfulness] app and just take time to just, to just be quite and still and kind of give myself some comfort.” .ability to let things go: “I am better able to kinda let things, not let things go, but like I said deal with it and then move on. Instead of, you know, keeping on and stressing on about one specific thing. You know I let my feelings be known, and then we go from there” . Another participant discussed an ability to take on perceived stress  with less impact: “It's like easier for me to cope with a lot of interactions. It would get overwhelming if I spent like 5 days in a row around a lot of people. But it's not as bad anymore. Like, I can recharge even with other people around sort of” . While still others described resilience as a type of emotional regulation. For example, one participant said her anxiety was seemingly gone after the programme:Before I went [to RISE], I had a lot of stuff going on in my life, and I was having a lot of anxiety. And it was affecting me, like I would have panic attacks and things like that sometimes. But when I went to the Immersion program, like it was gone. My level of anxiety has gone down like you would not believe. It’s like that’s the biggest thing that I’ve noticed, and I just don’t stress out about things like I used to. Similarly, participants described diverse mechanisms of resilience. One participant describes it as an allowance. Self-care seemed to arise from the interviews in a sense of permission to slow down, take breaks, and notice surroundings. “It's incredible how much it's shifted, and like I sleep in a little bit later, I get up, you know, I do, I sit and have breakfast, I walk my dog, and then just kinda go into work. Everything is just paced a little bit slower.” . These reports were in the context of self-awareness and self-acceptance. In respect to self-awareness a connection to noticing ones’ level of stress allowed for more self-care. For example, one participant describes burnout:So, all of those other intrusive thoughts would come in which also signaled to me of being a little tired or burnt out or what-have-you. So, being able to, it’s almost like self-soothing, you know, where I can listen, if I like, ‘Ok, I recognize that I’m not, that I’m starting to not pay attention or heard the car or someone just came into the office, let me re-focus on what this person is saying.’ A surprising element of the experiential and transformative benefits of RISE was the increased ability for self-acceptance and boundary setting. Participants reported engaging in behaviours that are beneficial and kind to themselves. Interlaced in reports of self-care was also an expression of self-willingness. She states that allowing herself to take a break allowed her to readjust “I might otherwise have just plowed along gotten exhausted or something like that. So, taking care of me, adjust-, shifted a bit as a result of the [program].” . As the former RISE participant suggests, a normalized view of a responsibility to continue work even in the face of negative outcomes, as she puts it ploughing through, may be why so many participants feel that the first step in self-care was allowing or permitting oneself the action. Also considered a component of mindfulness, this form of self-acceptance was expressed in choices to take time other areas such as food intake.Not to feel guilty about eating something that is not good for you and to just fully enjoy it. I think that makes it easier to make healthful choices because you don't feel like you are breaking the rules when you make a not as healthful choice. It was like a really, a really important shift for me in thinking of like you know really enjoying each experience for what it is without, without attaching a judgment to it. Indeed, this self-soothing tool seemed to have a lasting impact on participants. One participant elaborated on transformation in a sense of letting go breath and describing the effect being multiplied and saying, “I share them! I like to do it myself and I share with others.” .While intraindividual self-acceptance and self-compassion was often discussed, interindividual reports also arose from the interviews. A construct not explicitly taught through the programme that emerged as a perceived outcome was participants’ sharing with others the practices, constructs and experiences from the programme. For example, one participant increased in excitement when talking about the tool I’ve had a lot of kids who are having like panic attacks and like just a lot of distress after being restrained. So, just kinda being with them and having them follow my breath to get them to focus and calm down and be able to talk has been helpful for them. As frontline professionals are often working with challenging populations, the use of teaching internal tools to others seemed to be a commonly referenced impact for participants. As one participant who works at a juvenile rehabilitation centre said, “… using those skills in our facility was also extremely helpful.” . Tools referenced varied but often included breathing and yoga techniques as one participant shared: “We do the like sun salutations as a way to end our session and get them to take some nice, letting-go breaths.” . The tools most commonly cited as something used in the frontline professional’s work setting to teach had to do with breathing. It seemed particularly useful in situations dealing with anxiety and stress. Once participant describes this:I participated in some parent education groups at a local elementary school, and we, that’s what we called it, “riding the wave of, riding the wave of parenting,” and then we identified 5 workshops based on some Kripalu language: “Staying calm when your child cannot,” “how to stay calm in a hectic world.” So, so, that really just solidified that even more for us as a, as a whole agency. Some participants described sharing with others the practices, constructs and experiences after the RISE programme such as the “experience within”. Often this was in the context of bringing presentations and education to outside groups. For example, one participant spoke about sharing the experience at work saying, “I have the experience within me and just try to communicate to other people, “Hey, I want to share this experience.” . Shared language was also used to describe educational and informational programming that the participants used to share their learning at RISE. For example, one participant described programmes created at a local school:The environment we work in is very almost militaristic and very like team-oriented, and it’s very much like, you know you don’t let other people down and sometimes self-care is seen as like selfishness if someone is like, “Oh, I need to take a break.“ But I see that people are making time for themselves. And I think it’s just because you know that individuals that went to Kripalu or you know are practicing mindfulness, and you know, self-care and things like that are kinda speckled in. So, I think it’s, it’s making it ok for people to say that, “I’ve had enough.”, “I’ve set good boundaries”. An emergent concept from the participants was intentional sharing of practices and constructs with inference to a desired shift workplace culture. Participants shared ways in which they used their experience to cultivate a shared culture and environment of resilience-based pursuit. Through the interviews, this holistic integration of environment and tools was a common theme. Overlapping codes of transformation, tools, mindfulness, and sharing often painted a picture of a centred approach of resilience integration. Some participants demonstrated this through interlacing tools, experience, and relationships in multiple components of the workday. One participant described this holistic/integrated transformation as seen through co-workers who also attended the RISE programme:Permission to Feel, Marc Bracket describes a similar expression in students learning to express emotional responses. While it is beyond the scope of the current paper, our data does suggest that perceived positive impact of the RISE program related to the ability to experience the learning process in an environment that felt safe.This paper presents participants’ reflections on usable skills, learning transfer, and transformative experiences of participation in the RISE programme. Of note was the shared construction of understanding through lived experience and a sense of permission. Permission for self-care and compassion was described as a novel lived experience by participants. For many, this feeling of “making it ok”  provided structure for expressions of their ability to cope with stressful situations and difficult conversations. In conjunction with the enthusiastic towards sharing their experience, this suggests a social and experiential component to the curriculum. In his book, The professionals who attended the RISE programme described using yoga-based practices to improve resilience. They further described experiences, concepts, skills, and practices that they believed led to improvements in psychological health and wellbeing. Participants also reported ways in which they shared yoga-based practices with others suggesting a belief that the skills learned could positively impact others and a desire for others to benefit. These findings give meaningful depth to the quantitative reports of empowerment and positive affect 2 months following participation . While this was clearly expressed by the participants, a more nuanced view of mindfulness, involving a and Eden  discuss In addition to the use of tools to support resilience, participants described a state of being more resilient. Examples of resilience implicitly included emotion regulation through the use of both intentional and observed-unintentional use of mindfulness and other tools. This resembles Braunstein’s framework outlining a layered and dynamic learning process of emotion regulation  acquired behavioural skills and practices; (2) lived mindfulness; (3) resilience to stress and emotion regulation; (4) self-care and self-compassion; and (5) sharing with others the practices, constructs, and experiences after the programme. Further analysis of these themes demonstrates nuanced, integrated, and contextual meaning in relationship with reported transformation. Frontline professionals’ perceptions of benefits were experiential, this lived mindfulness offers an expanded depth of understanding and connection to the curriculum. In addition, the implied need for allowing self-care and potentially socializing self-compassion underlines the importance of self-care as a curricular component and shows the potential impact of participation in the RISE programme reaching beyond the individual. Furthermore, a social component was observed to have perceived importance. Participants reported with excitement sharing with others the tools learned and thereby spreading the benefits in their home environments. The second aim was to evaluate perceptions of the perceived long-term (3-months post-programme) impact of participation in RISE. Accounts of experience at Kripalu were positive, commonly citing the retreat experience as transformational. Upon leaving the retreat learning, or self-regulated skill acquisition, seemed to be both deliberately and organically transferred to frontline professionals’ daily lives.Informed by these findings, suggestions for future research are directed towards analysing and measuring participant reported perceptions. In particular, understanding phenomenological components of lived mindfulness and perceived resilience through emotion regulation strategies to provide a more dynamic analysis of quantitative findings. In addition, obtaining a baseline measurement of time for self and negative self-talk to evaluate long-term change. Finally, we encourage establishing a strategy to measure participant sharing of programme practices, constructs, and experiences to better understand long-term impact.Click here for additional data file.


Individuals living with cancer often experience multiple nutrition-related side effects from cancer treatment, including changes in taste and smell, nausea, diarrhea, loss of appetite, and pain during eating. These side effects can profoundly impact nutritional status and quality of life. The purpose of this study was to explore experiences with nutrition-related cancer treatment side effects among cancer patients and their family caregivers, the way they manage such side effects, and the resulting changes in food preferences and behaviors. Structured surveys and in-depth interviews were conducted. Interviews focused on the presence and management of treatment side effects, how those changes influenced food preferences, and the extent to which they interfered with quality of life. Most patients (72%) reported treatment side effects; 61% reported that these side effects impacted their eating and drinking. Common side effects included fatigue (58%), dry mouth (30%), nausea (24%), constipation (20%) and diarrhea (20%). Six overarching qualitative themes were identified: Spiral of side effects; Pain of eating; Burden of eating; Loss of taste/change in taste; Symptom management; and Solutions. The authors conclude with implications for food and nutrition practice—moving beyond traditional recommendations of what to eat or avoid—to consider the overall patient and caregiver experience. Cancer treatments, especially chemotherapy, can cause sudden and dramatic changes in taste and smell, nausea and vomiting, diarrhea, loss of appetite, sores in the mouth and throat, trouble swallowing, dry mouth, and fatigue . The likThe role that caregivers play in helping to mitigate the nutrition and dietary side effects of cancer treatment is critically important, yet often overlooked. Moreover, the impact on the dietary intake and health of a person taking care of someone with nutritional side effects is understudied. Defined as individuals who care for relatives or friends diagnosed with cancer as a primary diagnosis, cancer caregivers are instrumental in providing vital care. In addition to emotional, informational, and functional support, caregivers often provide skilled care, including activities that range from dressing wounds, cleaning ports, and managing treatment side effects. The roles and responsibilities of a cancer caregiver begin at diagnosis, and vary with type, stage and severity of cancer, and can last for months or several years until recovery or loss of life of the person being cared for.While research has documented the frequency and severity of the side effects experienced by patients related to cancer treatment, we know little about dyadic interactions when trying to manage (and cope with) treatment side effects. Therefore, the purpose of this study was to explore patients’ and caregivers’ experiences with cancer treatment side effects, including the way they manage those side effects and the resulting changes in food preferences and behaviors. These insights of the lived experiences of families navigating cancer treatment provide additional guidance on how to tailor supportive care interventions to mitigate treatment side effects and improve eating-related distress for both patients and their families. This study is a component of a broader program of research to guide the development of tailored nutrition and physical activity programming to improve cancer survivorship and caregiver health.This multiple methods study employed a quantitative structured survey and semi-structured qualitative in-depth interviews using an inductive thematic approach. The investigation was nested within a larger, convergent mixed methods study that aimed to inform the development of tailored nutrition and physical activity programming to improve cancer survivorship and caregiver health.Individuals living with cancer who were undergoing cancer treatment (patients) and their caregivers were recruited through a partnership with The American Cancer Society’s AstraZeneca Hope Lodge (Hope Lodge) in Cheltenham, PA, which provides housing for individuals receiving outpatient cancer treatment more than 40 miles away from their homes. All guests must be accompanied by an adult caregiver during their stay. Patients at Hope Lodge who were undergoing active treatment, and their caregivers, were recruited through flyers, word of mouth, and announcements at community dinners. Participants received a maximum of $50 for their participation in study activities. Patients were eligible to participate if they were 18 years of age or older, going through active cancer treatment, and had the ability to read and speak English. Caregivers were eligible if they were 18 years of age or older, the caregiver of someone going through active cancer treatment, and had the ability to read and speak English. This study was approved by the Institutional Review Boards at Drexel University and University of the Sciences; and written consent was obtained from all individuals prior to participation. Data were collected between June 2017 and September 2019.A structured survey was used to obtain the participant’s demographic and personal characteristics, including cancer and caregiving characteristics. For patients, seven questions were asked about treatment side effects and their resulting food preferences and aversions, which were adapted from a previously developed self-report questionnaire . SpecifiDescriptive characteristics from demographics and the prevalence and severity of nutrition-related treatment side effects in patients were summarized using means and standard deviations for quantitative variables and frequencies and percentages for categorical variables. Quantitative statistical analyses were performed using SAS v. 9.4 .In-depth interviews were conducted with patients and caregivers separately. All interviews were semi-structured, and open-ended questions were followed by probes and transitions. In-depth interviews focused on the presence and management of nutrition-related treatment side effects, such as altered taste and flavor, and how those changes influenced food preferences and the extent to which they interfered with participant quality of life. Interviews with caregivers also asked about caregivers’ own nutrition goals and how the cancer experience (such as treatment side effects) impacted their diet. Separate interview guides were created for patients and caregivers. Interviews lasted approximately 30–45 min and were conducted in a private room.Interviews were audio recorded and transcribed verbatim. Transcripts were first read multiple times by five study team members. Transcripts were analyzed using an inductive thematic analysis approach. Following the method outlined by Ely et al. (1997), data representing each code were printed and three coders manually manipulated the data into piles, over multiple rounds, to tell a collective story representing the lived experience of the patients. These collections of data were then reviewed by the other researchers in the study to assess if they rang true to the overall impression of the setting and the experiences of the participants. To ensure respect for each participant, the words of the participants are presented without or with or minimal editing to allow the reader to understand the participant experience and assess for themselves whether the themes from the analysis ring true to the words of the participants.One hundred and two participants  completed the structured survey and 40 participants  completed in-depth interviews. Forty-two percent of patients and nearly 81% of caregivers were female . The majAll of the patients were undergoing active cancer treatment. A variety of cancer types were presented in the sample; hematological cancers (20.8%), head, neck, or lung cancer (20.8%), gastrointestinal cancers (16.7%), or other solid tumors (41.7%). Twenty-five percent of patients reported 10 or more days of absence due to treatment, and 12% of caregivers reported 10 or more days of absence due to their caregiving role. Caregivers reported providing a median of five hours per day of caregiving responsibilities, seven days per week.Seventy-two percent of patients experienced treatment side effects, and of those, 61% reported that the side effects they experienced had an impact on what they were able to eat and drink . The mosPatients also ranked a list of the most important characteristics for stimulating appetite. On a seven-point scale, patients were asked to rank the following characteristics in descending order: taste, ingredients, odor, consistency or texture, quantity, presentation, and other. Taste was the most frequently cited characteristic to stimulate appetite (median score of 6), followed by ingredients (median score 3.5), odor (4), consistency/texture (4), quantity (2), and presentation 4; . While nRegarding snack preferences in the past month, the most frequently reported foods or flavors that patients preferred were ice cream (44%), sweet (42%) and salty snacks 40%; . Less frWe identified six themes from the analysis: (1) Spiral of side effects; (2) Pain of eating; (3) Burden of eating; (4) Loss of taste/change in taste; (5) Symptom management; and (6) Solutions. We also identified three through-lines, which served as a second layer of themes that appeared throughout our participants’ experiences. These through-lines included: (A) Caregiver empathy and sharing experience of treatment; (B) Complementary and alternative medicine in conflict with traditional oncology protocols; (C) Be warned, but you’re on your own to figure this out. One of the themes that emerged from the qualitative interviews is that, contrary to what a healthcare professional or pharmacist might tell a patient about a drug, its intended treatment, and its potential side effects, the lived experience of a patient and their caregiver is not so orderly and linear. Appetite, nausea, diarrhea and constipation, and other digestive functions are embedded in a complex nexus of treatments and symptoms that overlap. Patients take drugs to address the nutrition related treatment side effects, which in turn necessitates coping with, or treating with, an additional drug, which leads to further side effects.“Ah, the thing is, I take so many pills that I don’t, that everything…you get one pill for something and then they give you something else and they give you a pill for that…and it’s just never ending. So, I never know which one is giving what so that’s, that’s the only thing that I research a lot ah, possible side effects.”—DamienAlfred confirms,“I mean everything is about strength of side effects, then you take something for that side effect and then, you know, you get another side effect from that and…”The patient message resonates with the caregivers as well.“Oh, yes, the vomiting, nauseousness [sic], loss of hair, fatigue. Of course you’re gonna have fatigue with cancer, and yeah. We expected them. I went through it three years ago, so I kinda knew what he was gonna do, and he did too, because he was my caregiver, so we were kind of blessed that way (laughs), you know?”—Lenora“He has side effects…Mostly cramps, fatigue, some pain—he don’t sleep very well. He’s depressed…I think my role is to support him…Try to help him hang on.”—DouglasEating is one of the great pleasures of life. However, for a patient or caregiver, the blessing of a good meal can become overshadowed by the pain of trying to get—and keep—a meal down. This is not just to say that it is physically taxing for patients, but it is also difficult for caregivers to watch and try to remedy. From the patient perspective, John shares his experience.“So, when I swallow, it was like forcing a ball in my mouth you know, and like ripping my throat. And I became leery about how I would swallow and what I would swallow. Um…and the tear begins to keep going on and I took pain pills.”Additionally, later…“You know, they said it was like guaranteed that I would like go through these symptoms, especially since I am being treated for my tongue too, back part of my tongue. The ah, ah then it would make ah, ah large difference you know in my eating and my swallowing you know, and it came out to be true.”Caregivers empathize with the pain of their loved one.“His taste has completely left, he has no taste. Um, extremely dry mouth. A lot of pain swallowing, the skin is starting to turn colors. He has lost a lot of weight I’d say. He started out at 210, he’s 197 now. And the doctor is like ‘No! Beef him up and…’ Let’s see what else… Irritable (laughs). Oh—and he’s got the ulcers, he has the open ulcers in the mouth. They warned us… but it’s nothing like actually going through it.”—JaniceRelated to the theme ‘Pain of eating’, is food and nutrition being a burden more broadly, for patients and caregivers. In the following quotations and stories, Douglas, a caregiver, points out that both he and his son have both lost their appetite.“We don’t have normal appetite because he doesn’t.”—DouglasRoy shares his struggle after he received a stem cell transplant; and Janice, a caregiver, expresses feelings of defeat and worry.“The first time I really ever felt any effect, physiologically from treatments or my cancer or anything, was the stem cell transplant I had a year ago. And that…they told me going in that they said it would be it would be it would be a rough experience for me, you know, to get through there. I can remember uh…losing my appetite and…which, which was…I mean I like food…so losing my appetite was something I didn’t cherish at all. And food just sort of it just lost its appeal you know from a nutrition standpoint.”—Roy“I’m starting to feel defeated. Because I’m like if you lose any more weight, you know, and I’m so afraid for this, it’s like—he is doing the best he can. He’s eating. He is eating. He’s just not eating as much. He went from eating a whole bowl of oatmeal, to a half a bowl, to now it’s a couple of bites. I’ll just drink an Ensure and I’ll be alright and I’m watching this. And in his mind, he’s eating a lot, he’s doing great. And I’m like “Really?” (laughs)…you’re losing weight. I’m worried. I’m starting to worry. I just don’t know what else to do.”—JaniceThe burden of appetite does not exist in a vacuum but is tied inextricably to loss or change in taste. Because taste is both personal and subjective (how am I to know how something tastes to you?) and challenging to measure , this is a poorly understood side effect that does not garner as much attention or empathy from healthcare professionals as it should. However, to a patient, it can be exhausting.“Well the thing they did not they did not…they did not clue me on ahead of time was that the low dose radiation would wipe out my taste buds. For, for a significant period of time, probably, a good month or 6 weeks. That’s tough! It’s tough to lose your ability to taste food. You know, I mean pile that on top of questionable appetite you know…That—I wasn’t expecting and that was probably, through all of this, I’d have to say, through all the fatigue, fatigue and everything I can handle it, but the inability to taste food properly, and then when the buds came back. It came back in waves like salt, you know so everything tasted salty you know, or bitter, or lack of sweet sense, and so you’d eat something that’s supposed to be nice and sweet and yummy and you know it’s just ‘psst’. I’ll tell you it’s a really, really, really tough time.—Roy“I would try to eat something different at every day just to see if something ah, made sense, if something changed. Ah, there was this different taste I could catch from something in the…I tried, I tried, but it didn’t happen. Nothing would taste…like anything.”—DamienFor the caregiver, it can feel helpless and futile to get their partner to eat.“It started out with everything tasted like metal for a couple weeks. And now, since last week, he has zero taste (laughs). Unless it’s super strong, like if he eats something that has citric acid, he’ll taste a twinge of it or if it’s super spicy. Other than that, he has zero taste. So, I try my best—‘You got to try to imagine it, try to imagine it… Eat with your eyes.’ But that doesn’t work, of course. So I just say—‘Just let it go down. When your stomach feels full, stop.’ (Laughs). But it’s like—trying to get him to want to eat. And he says ‘Well what’s the point? I can’t taste it.’ And I say ‘Because you have to eat.’ So, because he doesn’t even want to eat now, that’s the problem I’m dealing with now. But now, they’re threatening him with-- if you lose any more weight, you’re going to get a feeding tube. So now it’s like ‘Give me potatoes!’ (laughs).”—JaniceRelated to the challenges of eating and the spiral of side effects is a parallel spiral of treatments, solutions, and suggestions being proposed by healthcare professionals, caregivers and the patients themselves to attempt to ameliorate the symptoms. This puts additional work and burden on patients and caregivers, especially when they are not effective, resulting in further frustration. Damien, a patient, shares his experience following a (common) suggestion that patients hear, which is to eat spicy or overly flavorful food…“They just recommended that kids like Doritos because they have a strong taste, so that, that (laughs) was like the only thing that kids would eat cause it, ah, ah…I don’t know, it has a strong taste so that, that would make them taste a little bit, but ah…There was, there was nothing you could do about it, about not having taste buds…”Interviewer: “Did you try the Doritos?”   “I think I did (laughs)…”    Interviewer: “Could you taste them?”      “No.”       Michael, a caregiver, shares their dissatisfaction with medication management for symptom alleviation.“Yeah, they offered some—you know, the first thing is—well, first off, if I back up, she had some constipation, because of the pain they did give her a little oxycodone, very small amounts, which constipated her. So, they gave her Colace. So, their basic thing is to drug it and then the diarrhea, they were saying the Imodium. But we did talk to the naturopath there who we really respect and she really respects, I mean, cause she—they talk their own lingo, so they’re—so the naturopath has been very helpful because her thing is food and things.”With all of these side effects, and their fraught causes and treatments, both patients and caregivers grasp for solutions, especially from complementary and alternative medicine and looking towards “super foods”, that can somehow be more powerful in nutrition and healing than their inherent properties allow.“For the bone, she was taking (stutters) some joint support, some (pause) different herbs and things like that and it’s a whole—it’s about 30 some herbs and stuff, but she was taking a lot of that. She was taking some stuff to build up the blood. She was taking some stuff to, like—guava and some other things that would help attack the cancer. So she was doing a lot of herbal stuff to actually attack and treat the cancer that was non- “medicinal” and this was prior to getting (stutters) the herbs.”—Michael“I’m thinking the bone broth and then protein shakes rather than that Ensure refrigerator. [Laughs] Yeah. We’re both not into the Ensure, that’s for sure. Although she was because part of her problem before she was diagnosed was she was having trouble eating. So, she was eating—she was downing Slimfast shakes because she was forcing herself to eat something. And you know, I’m like, let me make these shakes for you. They’re good, you know. It’s plant-based protein and coconut oil, fruits and greens. So, she has had those with me and she is open to that. I said, ‘Before you drink anything like that other stuff, please let me just do this with you.’ [Laughs]”—BethFor most individuals living with cancer, the experience of nutrition-related side effects during cancer treatment is uniquely distressing for the individual and their family. In this study, the majority of patients 72%) reported treatment side effects and 61% reported that these side effects impacted their eating and drinking. The most common side effects included fatigue 58%), dry mouth (30%), nausea (24%), constipation 20%) and diarrhea (20%). In addition to the side effects prevalent among our patient population, people with cancer often experience changes in taste and smell, which include experiencing pervasive bad taste , being unable to perceive food taste, and experiencing modifications of the perceived taste of food [2% report%, dry mo% and diaAlthough many caregivers attribute personal fulfillment to their caregiving role, cancer caregiving has also been associated with extreme physical, psychological, and financial distress, many reporting that caregiving is a driver of their worsened health status . In factCaregiver empathy and sharing experience of treatmentComplementary and alternative medicine in conflict with traditional oncology protocolsBe warned, but you’re on your own to figure this outThe unmet needs of individuals with cancer and their caregivers described herein call for continued research and the development of programs tailored towards assisting cancer patients and their caregivers to navigate treatment-related side effects. Hence, the primary aim of this study was to  explore patients’ and caregivers’ experiences with nutrition-related cancer treatment side effects, including how they manage those side effects and the resulting changes in food preferences and behaviors. The following six themes emerged: (1) Spiral of side effects; (2) Pain of eating; (3) Burden of eating; (4) Loss of taste/change in taste; (5) Symptom management; and (6) Solutions, work both independently and together. Independently, they represent baskets or buckets of common experience that can provide guidance to patients, caregivers, and healthcare professionals regarding what might be expected in treatment. Together, they suggest some through-lines that make our understanding of the patient and caregiver experience more meaningful . These aOne of the things the research team observed in interviewing patients and caregivers, and in performing the subsequent transcription and analysis, is that it is sometimes challenging to differentiate between patient and caregiver. There is a practical reason that patients and caregivers became conflated—as treatment progressed, their empathy for one another deepened and there was a mutual sharing of the side effect experience and the burden. This burden becomes heavy as cancer care is often focused on treating the cancer, with less emphasis on the side effects, shifting a lot of the management responsibility to the care partners.Patients and their caregivers experience a wide range of emotional and psychosocial consequences as a result of treatment side effects. When faced with the reduced ability to enjoy food and eating together, patients and caregivers share feelings of anger, anxiety, guilt, disappointment, loss and grief, shame and suffering ,29,30. WResearch has also shown that sharing food preferences, food provision and food preparation are behaviors that can regulate interpersonal relationships, whereas discrepancies in these food behaviors can lead to relational discord ,36,37,38In summary, caregivers share the psychosocial and emotional impacts of treatment side effects and are at high risk of negative physical, psychosocial and emotional consequences. They experience a high sense of responsibility in alleviating side effects and providing care more broadly. Therefore, caregivers should be monitored by healthcare professionals during patient care, which is a central tenet of person-centered care. Developing and testing interventions that improve caregivers’ capacity to provide high-quality care while simultaneously improving their nutrition and long-term health is a top priority. Additional research is needed to develop nutrition and culinary dyadal interventions that harness the influential role that each member of the dyad holds, while simultaneously being responsive to their unique needs.As mentioned above, evidence-based oncology protocols are used for the treatment of cancer. However, when it comes to the treatment of side effects, the tent is much bigger. Complementary and alternative medicine (CAM), herbalism, functional ingredients and folk medicine are fair game for trying to stimulate appetite, suppress nausea, and soothe the pain of swallowing and so on. Often, caregivers and patients are left to source these treatments on their own—healthcare professionals may not have an awareness about such remedies or may even actively discourage their adoption, for fear of contraindicating a treatment. The use of CAM activities, which include medical and other health-related products and practices that are not a part of standard medical care, has increased in recent decades . FindingParticipants in our study expressed a lack of communication with their healthcare team related to CAM approaches, and this has also been reported by others . Open coHealthcare professionals are skilled at listing potential side effects of a drug or treatment. Patients and caregivers report that healthcare providers are less skilled at guiding them through side effect management. The result is a sense that patients have been warned that these side effects are coming without having received adequate guidance or support to cope with them. Relatedly, they have been warned in brief about side effects such as nausea or change in taste perception. However, brief summaries do not explain just how grave and debilitating these side effects can be, in terms of, for example, a complete disgust and distaste for food of any sort. In this way, the term “side effect” tends to minimize this very real and substantial impact such treatments can have. Being ill-prepared for the impact of cancer treatment, even when forewarned by their cancer care team, is a re-occurring barrier documented in the literature. Despite the anticipation of treatment side effects, patients and caregivers report feeling unprepared for their severity . Some faWhile further intervention research is needed to elucidate the most effective approaches for preventing and mitigating treatment side effects, there is also a real need for improved transparency and support. Providers should be transparent about anticipated side-effects, their severity and management. Sharing experiences of patients and caregivers, such as those illustrated in this paper, has the potential to both improve transparency and reassure that patients and families are not alone in their struggle.The strengths of this study were the inclusion of both patient and caregiver perspectives and the timeframe of data collection. Participants completed study activities while undergoing cancer treatment. This allowed participants to describe their experiences in real-time or to reflect on their experiences shortly after they occurred. This study was not without its limitations. Participants were recruited using convenience sampling and the data collected in this study were cross-sectional and self-reported. Therefore, causal inferences cannot be made and some of our findings could be susceptible to social desirability bias, subjectivity and recall bias. Our sample was racially homogenous, older in age, and the majority of caregivers were women while the majority of patients were men; these findings may not be generalizable to other cancer patients and caregivers.Eating is among our most pleasurable, inter-connected experiences. Cancer, its treatment, and its side effects quickly transform this positive and pleasurable experience into a curse—an obligation that must be “managed” and “handled” for both patients and caregivers, with little direction provided by the care team. Understanding the lived experience of both cancer patients and caregivers regarding nutrition-related cancer treatment side effects can yield multiple benefits. First, healthcare providers can become better versed in helping patients and caregivers to anticipate and prepare for treatment side effects. Second, the study revealed the lack of a linear and evidence-based approach to mitigate treatment side effects and this is something that should be further investigated. Better anticipating and managing these nutrition-related cancer treatment side effects can position both the patient and caregiver to better achieve improved nutrition and related health outcomes. There is a great need to identify effective interventions to reduce nutrition-related treatment side effects in people with cancer as well as mechanisms to increase caregiver preparedness and self-efficacy to manage side effects. Such interventions could dramatically improve the physical, emotional, and psychosocial health of patients and their caregivers.