How people understand and adapt to living with dementia may influence well-being. Leventhal’s Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort. We elicited dementia representations (DRs) using the Representations and Adjustment to Dementia Index (RADIX), a validated measure based on the CSM, identified groups sharing distinct DR profiles, and explored predictors of group membership and associations with well-being, and whether problem-focused coping played a mediating role in these associations. We identified four DR classes: people who see the condition as a disease and adopt a diagnostic label; people who see the condition as a disease but refer to symptoms rather than a diagnostic label; those who see the condition as part of aging; and those who are unsure how to make sense of the condition. A fifth group did not acknowledge any difficulties. “Disease” representations were associated with better cognition and younger age, while “aging” and “no problem” representations were associated with better mood and well-being. The association with well-being remained stable over 24 months. There was limited partial support for a mediating role of problem-focused coping. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to dementia. DRs provide a framework for personalizing and tailoring both communications about dementia and interventions aimed at supporting people in coping with dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged. Adjusting to decline in health in later life is an adaptive task that has to be negotiated by a substantial proportion of the older population , and theThe Common Sense Model (CSM) of Self-Regulation is an evolving social cognitive approach that describes the dynamic processes through which people perceive, interpret, and respond to health threats and illness-related information, and the way in which these processes influence physical, functional, and psychological outcomes independent of pathological markers of illness . The modIRs are commonly assessed using the Illness Perceptions Questionnaire , althougA model based on perception of threat is highly relevant in the case of dementia, an umbrella term for a feared, stigmatized and ultimately terminal range of age-associated conditions with no effective disease-modifying treatment or cure. This is reflected in what is known about the dementia representation (DR) prototypes held by the general public. A survey of nearly 70,000 people in 150 countries demonstrated that most adults think they could develop dementia at some time in the future (95%), and the majority (78%) are worried about this . In the The majority of the general public view dementia as part of the aging process . HoweverDeveloping dementia has been conceptualized as a potential threat, not just to health, but to a person’s whole identity . In the People confronted by a diagnosis of dementia and its implications adjust and cope in different ways , 2003, aThe findings from 1To describe the DRs held by people living with mild-to-moderate dementia.2To identify groups sharing distinct DR profiles and explore between-group differences and predictors of group membership.3To model the cross-sectional and longitudinal relationships between DRs and capability to “live well” with dementia.To summarize, the CSM describes the psychological and behavioral processes through which people conceptualize and respond to perceived threats to health, and how these processes influence coping strategies and outcomes; IRs have both direct effects on outcomes and indirect effects mediated by coping. This model may help illuminate the processes through which people with dementia adjust to and cope with the condition, the factors that influence these processes, and the ways in which processes of adjustment lead to different outcomes, including differences in capability to “live well”  with the1Those holding illness-type representations would score lower on measures of “living well” than other groups, and this pattern would remain evident over time.2There would be between-group differences in the types of coping strategy adopted.We expected that analyses would identify groups holding different DR profiles, including “illness” and “aging” profiles as well as those who perceive “no problem,” and we hypothesized that:We used cross-sectional data from the initial assessment wave  of the IDEAL cohort  and longPeople living in the community in Great Britain  with a clinical diagnosis of mild-to-moderate dementia, of any type, and a Mini-Mental State Examination MMSE;  score ofTable S1. Participants were visited at home on three occasions at T1 and on two occasions each at T2 and T3 to complete the assessment. People with dementia completed their questionnaires in an interview with a researcher while caregivers concurrently completed their questionnaires independently, with support from the researcher if required.T1 data were collected over a 24-month period from 2014 to 2016, T2 data were collected from 2015 to 2017, and T3 data from 2017 to 2018. The cohort comprised 1,537 people with dementia and 1,277 caregivers at T1, 1,183 people with dementia and 988 caregivers at T2, and 851 people with dementia and 759 caregivers at T3. Reasons for attrition are summarized in Demographic characteristics considered for participants with dementia were as follows: age; sex; ethnicity ; educational qualifications ; socioeconomic status, classified as I/II , III-NM/III-M , IV/V/armed forces (partly skilled/unskilled), not applicable/missing, as derived from UK Office for National Statistics occupational classifications ; living strongly disagree to strongly agree; example item: as a result of my … I cannot do some of the things that I used to do); and experience of emotional consequences . In the IDEAL interview, administration of the timeline item differed from the validated measure in that the possible outcomes  were presented as three separate questions rather than one single question.DRs were assessed with the RADIX . An initstrongly disagree to 4 = strongly agree, with higher scores indicating greater perceived stigma. The items used were as follows: I feel I have been treated with less respect than usual by others ; I have experienced financial hardship that has affected how I feel about myself ; I feel others think I am to blame for my [condition/difficulties] ; I feel set apart from others who are well . In line with the approach taken in the RADIX, the interviewer employed the term used by the participant to describe the condition or the associated difficulties .Participants with dementia who completed the RADIX also responded to questions about perceived stigma and coping styles. Perceived stigma was assessed with four items from the Stigma Impact Scale ; one itestrongly disagree to 4 = strongly agree. The set of 12 coping items was developed as follows. Fifteen items representing the range of practical and emotional coping strategies described in the interviews were identified for inclusion in the IDEAL interview at Time 1. The items were phrased in a way that was similar to the wording used by participants in the interviews and adopted the same convention as the RADIX whereby the interviewer inserted the term used by the participant to describe the condition or difficulties experienced. Items focusing on specific memory strategies were not included as, in contrast to the 2016 study where participants had a diagnosis of Alzheimer’s disease and hence memory difficulties were likely to be particularly salient, IDEAL cohort participants had various types of dementia. To align these items with typologies of coping typically used in studies of IRs, five expert raters were asked to classify the items into one of the categories identified and defined by Online Supplemental Material, Appendix G): avoidance, cognitive reappraisal, emotion venting, problem-focused, and seeking social support. In a first round of rating, consensus was achieved on the classification of 10 items, and in a second round, consensus was reached on a further 3 items where one rater had differed from the rest in the first round resulting in 80% agreement. Two items that achieved less than 80% agreement in the first round were considered too ambiguous and were discarded. This process yielded a set of 13 items, classified as problem-focused (6 items), cognitive reappraisal (2 items), avoidance (4 items), and seeking social support (1 item). Next, we explored whether these groupings were supported statistically. Using a polychoric correlation matrix, the results of a Kaiser–Meyer–Olkin test (0.72) and a significant Bartlett’s test (p < .001) suggested that the items were suitable for factor analysis. Factor analysis using the psych package in R yielded a four-factor solution. The problem-focused and cognitive reappraisal items  loaded together onto a single factor. Three of the four avoidance items loaded together onto a second factor. The social support item loaded onto a third factor. A further item classified by the expert raters as avoidance was the sole item loading onto a fourth factor and was discarded. Thus the final set of 12 items comprised 6 assessing problem-focused coping , 2 assessing cognitive reappraisal , 3 assessing avoidance , and 1 assessing seeking social support (I rely on others for help). Sums of the variables within the four coping types were used for analysis. The coping items are shown in Table S2 with details of classification by expert raters and results of the factor analysis.Coping styles were assessed with 12 items based on the coping data elicited in the interviews which formed the basis for developing the RADIX measure . For allCognition was assessed with the Addenbrooke’s Cognitive Examination-III ACE-III; ; this yinot at all true to 4 = completely true, with higher scores indicating greater perceived self-efficacy. Depressive symptoms were assessed with the 10-item Geriatric Depression Scale  were assessed with the 5-item ATOA subscale of the Philadelphia Geriatric Center Morale Scale PGCMS;  using a  GDS-10; ; respondpoor to 4 = excellent and higher scores indicating better QoL. The 5-item Satisfaction with Life Scale  were considered significant and reported. We then examined whether the four classes, plus a “no problem” group consisting of individuals who responded negatively to all screening questions, differed significantly in terms of demographic, dementia-related, and psychological factors, again using the BCH and DCAT methods, with Holm–Bonferroni correction for multiple comparisons. For measures with significant differences, post hoc comparisons were conducted and pairwise differences with an adjusted p value of <.005 (Bonferroni corrected to account for 10 two-tailed comparisons) were considered significant and reported. For participants with a participating caregiver, we also explored whether there were differences in caregivers’ experiences of caregiving. Multinomial regression was employed to examine predictors of group membership, using the BCH method in Mplus to account for misclassification error  < 3.0, comparative fix index > 0.95, Tucker–Lewis Index (TLI) > 0.95, root-mean-square error of approximation (RMSEA) < 0.08 (Linear growth curve modeling (LGCM) was conducted in Mplus to examine whether group membership predicted ability to “live well” with the condition both cross-sectionally at Time 1 (intercept) and longitudinally over Times 1–3 (slope). FIML estimation was used, which draws on all available data present for a given measurement occasion to estimate parameters. The measurement model is shown in ) < 0.08 . The assParticipants were the 1,109 people with dementia in the IDEAL cohort at T1 whose data were not used in the RADIX validation study. Of these, 1,033 participants (93%) endorsed at least one item on the RADIX screening checklist and went on to complete the full RADIX measure, while 76 (7%) answered “no” to all the RADIX screening questions, indicating that they perceived no difficulties (“no problem” group). Participant characteristics are summarized in RADIX responses covered perceived identity of the condition or difficulties, awareness of diagnosis, perceived cause, timeline or prognosis, and availability of ways of managing the effects of the condition. Regarding identity, just over a quarter of participants responded by spontaneously giving a specific diagnosis. Over half of the respondents instead used a descriptive term to characterize the difficulties; in most cases, this was related to particular symptoms, such as “memory problems,” but in some cases, descriptive terms were related to emotional responses  or were more general in nature . Smaller proportions described their difficulties as aging, thought they did not have any difficulties, or said they did not know how to describe their difficulties. Those participants who did not provide a diagnostic label were asked specifically whether they were aware that a diagnosis had been made . Combining these responses with those of the participants who offered a diagnostic label without prompting, about two-thirds of the whole sample were aware of a diagnosis and just over half were able to give the diagnosis. Regarding perceived cause, the most frequently chosen responses were “don’t know,” “aging,” and “changes in the brain,” each selected by approximately a quarter of participants. Regarding timeline, just under half thought the condition would worsen over time, while a third were unsure and a few thought it would improve. The majority, about two-thirds, thought there were some possibilities for controlling the effects of the condition or difficulties. Details of responses to the RADIX and coping items for all those completing the full RADIX can be found in Table S3, both the three- and four-class solutions had the best fit indices; for the three-class solution, BIC = 12,548, ssBIC = 12,361, LMR-LRT p < .001, BLRT p < .001, and for the four-class solution, BIC = 12,635, ssBIC = 12,383, LMR-LRT p = .008, BLRT p < .001. BIC and ssBIC were lower for the three-class solution, but the LMR-LRT and BLRT suggested that the four-class solution was an improvement on the three-class solution. Based on these results, and on entropy and interpretability of the classes, the four-class solution was taken forward. The entropy of 0.819 suggests a high level of certainty in the classification of individuals  comprised individuals who used a diagnostic label, identified the cause as related to brain changes or disease, and mostly believed the condition would get worse over time. “Disease-symptoms”  comprised individuals who described the condition in terms of symptoms rather than a diagnostic label, but identified the cause as related to brain changes or disease, and again mostly believed the condition would get worse over time. “Aging”  comprised individuals who mostly described the condition in terms of symptoms, attributed these to aging, and perceived fewest practical or emotional consequences. “Unclear”  comprised individuals who described symptoms or in some cases a diagnosis, either did not know the cause or attributed the difficulties to brain changes, and did not believe their condition would worsen over time; the representations held by these individuals could be considered low in coherence. Significant differences between the classes were observed for all RADIX dimensions and for perceived practical and emotional consequences; results are summarized in Classes were characterized as follows. “Disease-diagnosis”  showed that those in the “disease” classes were likely to have better cognition, but poorer scores for QoL, satisfaction with life, and well-being, lower self-efficacy, more negative attitudes toward their own aging, and more symptoms of depression than participants in other classes. In contrast, participants in the “aging” and “no problem” groups tended to have higher scores for QoL, satisfaction with life, well-being, and self-efficacy, more positive attitudes to aging, and fewer symptoms of depression. It should be noted, though, that absolute differences in mean scores among the groups were relatively small. There were no significant differences in functional ability, number of comorbid health conditions, or perceived stigma across the groups (stigma was not assessed in the “no problem” group). There were no significant differences in caregivers’ levels of stress, distress at symptoms, feelings of role captivity, sense of competence, or endorsement of positive aspects of caregiving across the five groups and no differences in number or severity of caregiver-reported neuropsychiatric symptoms (Table S5c).Comparison of the five groups on dementia-related variables, measures of psychological characteristics and health, and measures of “living well” . Relative to the “disease-symptoms” class, mean “living well” scores at baseline were lower for the “disease-diagnosis” class, with mean decreases of 1.47 points for QoL-AD, 3.30 for SwLS, and 8.24 for WHO-5, but higher for the “aging”  and “unclear”  classes. The “no problem” group had the highest scores on each “living well” measure overall, with mean increases of 4.77 points for QoL-AD, 3.39 for SwLS, and 11.44 for WHO-5. Over time, there was little change in the “living well” measures. There were no significant changes in the trajectories of QoL-AD, SwLS, or WHO-5 for the “diagnosis-disease” class compared to “disease-symptoms” and no significant differences for the “aging” and “no problem” groups. For the “unclear” class, a small but significant decline was seen for SwLS and the trend was also observed for QoL-AD and WHO-5. The greatest differences were those seen at baseline.We next explored the effect of class membership on “living well” measures longitudinally. We examined the “living well” measures both at Time 1 (intercept) and as time progressed (slope), as shown in Figure S2).With regard to coping styles, the problem-focused coping score was selected for exploration of possible mediation effects because it both showed a statistically significant difference between the classes and, being based on responses to six items, was considered a sufficiently robust measure. To determine whether problem-focused coping acted as a mediator between group membership and “living well,” mediation analysis was conducted at baseline, using “disease-symptoms” as the reference group. As shown in This is the first large-scale study to examine the DRs held by people diagnosed with mild-to-moderate dementia and the first to use a validated structured measure to explore DRs. Based on the theoretical framework of the CSM of illness regulation, DRs were elicited covering the core components of IRs and identified four distinct classes , with significant differences across classes on all representation elements and perceived consequences; a further group (“no problem”) who did not acknowledge any difficulties was also identified. “Disease” representations were relatively more common among younger individuals. The first hypothesis, that those holding illness-type representations would score lower on measures of “living well” than other groups, was supported. The “disease-diagnosis” and “disease-symptoms” classes had higher cognitive test scores but lower scores for QoL, satisfaction with life, and well-being, which were generally stable over 24 months, as well as more negative attitudes to own aging, and higher scores for depressive symptoms, than the other groups. The second hypothesis, that there would be between-group differences in the coping styles adopted, was partially supported, with the most salient difference being lower endorsement of problem-focused coping strategies by participants in the “aging” class. For the “aging” class, problem-focused coping appeared to play a mediating role in the association between DR and scores on measures of “living well.”The findings confirm that it is possible to elicit DRs reflecting perceptions of label, cause, control, timeline, and consequences and to identify groups sharing certain common patterns with regard to their DRs. Four groups were identified through latent class analysis, alongside the “no problem” group identified through screening. Our previous study with a smaller sample yielded three clusters, “illness,” “aging,” and “no problem” . All 12 For many participants, the DR diverged considerably from a medical or “expert” understanding of the nature of the condition. Some participants did have a clear representation, but one that reflected either expectations of aging or a lack of acknowledgment of difficulties. Participants in the “disease-diagnosis” group, who used a diagnostic label and mostly saw the condition as a brain disease which would get worse over time, constituted only 14% of the sample. In line with previous findings , relativIRs are conceptualized as memory structures accessed through cognitive processes in response to perceptions of a health threat. Dementia can be understood as a profound threat to identity and independence  that alsSecond, cognitive changes due to dementia may affect DRs. Because a decline in aspects of cognitive and functional ability is a defining feature of dementia , DRs theThird, self-protective psychological processes may explain why, in some cases, the diagnosis of dementia or the associated difficulties are not acknowledged at a given time point . Lack ofIf these responses are self-protective, it raises the question as to what constitutes a positive DR. Typically IR clusters are described as positive or negative based on their associations with health outcomes . In the In terms of coping style, although differences were small, the most marked between-group difference was that people with dementia who held an “aging” model were less likely than other groups to use problem-focused coping. This may be because “aging” is a representation that tends to normalize any difficulties experienced and view them as a natural and expected part of growing older. While there is evidence that coping acts as a mediator of the associations between IRs and outcomes , this apIn this study, we tested a theoretical model with a large and well-characterized sample of people with mild-to-moderate dementia. Nevertheless, some limitations must be taken into account. Participants had all been given a medical diagnosis of dementia, but we do not know exactly how the diagnosis was communicated or what they were told about the condition or what information was communicated to family members. Practice in this regard is known to vary , and thiThe focus of the present study was on the subjective experience of people with mild-to-moderate dementia, primarily using a range of self-report measures. Some items may have been challenging for participants with dementia, but the measures were administered in an interview context and this meant the researcher could take time over more challenging items and repeat them as often as needed to aid understanding. A previous study using IDEAL cohort data  comparinUse of a validated structured measure of DRs is a strength. We did, however, observe missing data across all items, reaching levels >5% for control (9.2%), practical consequences (7.8%), and emotional consequences (6.8%). In this study, the RADIX was embedded in a relatively lengthy interview as part of a large survey, and items may have been missed for a variety of reasons. Given the nature of the RADIX and the type of reflection and processing required of participants, it may be preferable where possible to administer the measure in the context of a shorter, more focused interview. Measurement of coping followed the recommendation of The evidence this study provides about the nature of DRs has a number of implications. First, the information people with dementia access about the condition and how professionals communicate diagnostic and other details require careful consideration. The way information is phrased and communicated may directly affect the development of DRs. The negative statements used to demonstrate the mnemic neglect effect among people with dementia  were allSecond, it has implications for the kinds of support and interventions that are offered to people living with dementia and their families. Identifying patterns in the ways in which people make sense of the condition offers one means of personalizing interventions to optimize their perceived relevance and benefits. For example, interventions aimed at encouraging problem-focused coping may help to improve QoL particularly for those with “aging” representations, while those with other kinds of representation who already engage in problem-focused coping may benefit more from different approaches to improving mood, self-efficacy, and perceived capability to “live well.” The same intervention may be received in different ways and could potentially be harmful for some while benefitting others. Therefore, with interventions such as self-management or support groups focused on coping with the condition, a single standard approach may not be optimal. Instead, the approach could be adjusted to meet the needs of groups or individuals with different DR profiles.Third, it points to the importance of reflecting on what constitutes a positive or helpful DR. While the “disease-diagnosis” representation is most closely aligned with medical understanding, it also carries a detriment in terms of poorer QoL, satisfaction with life, and well-being. It would be inappropriate to actively encourage incorrect expectations, but the delicate balance between realism and maintaining hope requires careful navigation. Reaching consensus on the kinds of DRs likely to be most beneficial and hence most desirable to encourage among people with dementia and for their families, as well as on potential harms, would be helpful. Such a consensus would be important for shaping public education messages and campaigns aimed at raising awareness of dementia, and hence influencing prototype representations among those who might in time be diagnosed with dementia or find themselves caring for someone with dementia. Given the observation that currently available information can be perceived as highly negative , findingFinally, it is worthwhile considering whether, as the number of people living with dementia increases and policy, practice, and public awareness continue to evolve, the nature and distribution of DRs among people diagnosed with the condition might be shifting. There is some indication that certain elements of prototype representations held by the general public might be changing over time, with a reduction in the erroneous belief that there is a cure available and an increase in the belief that effective treatments exist seen over an 8 year period from 2008 to 2017, although no change in the extent to which dementia is viewed as part of the normal aging process . WhetherThis study provides the first large-scale evidence that DRs can be reliably identified among people living with mild-to-moderate dementia and demonstrates the potential utility of understanding what type of DR a given individual holds. Distinct DR profiles can be discerned that are differentially associated with individual and disease-related characteristics and outcomes. Of note, representations diverging from medical understanding of the condition appear to be associated with better self-reported mood, QoL, satisfaction with life, and well-being. This raises questions about what constitutes a positive DR and how its development might be encouraged, and about the best way to support people with different DR profiles. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to the onset and progression of dementia, and these processes can be influenced by the ways in which information about the condition is communicated. DRs could offer a framework for personalizing and tailoring both the style and content of communications about dementia and intervention approaches aimed at supporting people in coping with dementia, in order to promote optimal benefits.10.1037/pag0000650.supp


Background: Women shoulder a disproportionate burden of HIV infection in the United States and worldwide. Pre-exposure prophylaxis (PrEP) is an effective tool for HIV prevention, but its use is suboptimal. Primary care providers (PCP) are considered the ideal PrEP caregivers, but they generally underperform in PrEP care implementation. Methods: From 2020 to 2022, we employed semi-structured in-depth interviews to collect information about barriers and facilitators in PrEP care and beliefs and opinions regarding sexual wellness among 18 PCP and 29 PrEP-eligible women. We employed content analysis and thematic analysis to explore the transcribed narrative data. Results: The current study was guided by the “Communication Pathways” Framework. We studied how communication functions affect PrEP care and women’s sexual wellness on the pathways. We identified several specific pathways between communication and PrEP care implementation in primary care settings, including patient knowledge, linkage to care, therapeutic alliance, and decision making on PrEP care. A paradox regarding who should initiate the discussion regarding sexual history and PrEP care was identified. Conclusions: Findings suggested that a navigation and assistance system for PrEP care in patients and providers is urgently needed. Future studies should facilitate PrEP discussion, engagement, and monitoring in primary care settings. In 2019l trials ,7,8,9,10l trials ,5,6,7,8.l trials , suggestAlthough health professionals have made tremendous efforts, the uptake and provision of PrEP among people at risk of HIV acquisition has been slow . NationwPrEP is efficacious, safe, cost-effective, and particularly suited for women . PrEP trTo facilitate PrEP provision, Nunn and colleagues proposed a “PrEP implementation cascade” model, which suggests that progression along stages of the cascade must involve interaction and engagement among patients and health providers in the system ,29. PrimResearch exploring the association between patient–provider communication and health outcomes reported mixed results from favorable to null . The dis® portal, newsletters, clinic flyers, and social media). The research team conducted a screening survey combining demographics and eligibility criteria either by phone or by email to assess if the potential participant was eligible for this study. Eligible women were those who (1) were 18 years or older, (2) resided in N.Y. state, (3) had at least one visit with a PCP in the past 12 months, (4) had PrEP indications based upon the CDC guidance [Potential participants, including PCP and women with PrEP indications, were recruited from September 2021 to March 2022 from multiple routes  Once study subjects passed eligibility screening and provided the consent form, semi-structured interviews were conducted by ZOOM or by phone, based upon the individual’s preference. We used either a Health Insurance Portability and Accountability Act (HIPAA)-compliant digital recorder or HIPAA-compliant ZOOM with participants’ consent to record interviews. Overall, a total of 64 patients were contacted by the research team, 46 proceeded to eligibility screening, and 29 completed the interview. For providers, 40 contacted the research team, 20 were screened, and 18 were eligible and completed the interview a,b. According to the empirical evidence concerning the sample size sufficiency for semi-structure interviews ,41,42, wThese semi-structured interviews elicited information regarding how specific communication pathways affected the PrEP care continuum among PrEP-eligible women and primary care providers in the primary care settings. For PCP, we ascertained opinions that may facilitate and impede PrEP provision, patient interaction, decision making in PrEP initiation and care delivery, and potential solutions that may ease the communication procedure . For PrEP-eligible women, we explored their experience of doctor visits, interactions with PCP, and possible solutions that may facilitate their communication with their health providers regarding PrEP screening and PrEP consultation experience.®Atlas.ti) to facilitate the data analyses. Before analyses, all interview tapes were transcribed verbatim (except for identifying information). All qualitative data were de-identified. We employed content analysis and thematic analysis to analyze the transcribed narrative data ,45. We uWe included 18 providers and 29 PrEP-eligible women in the data analysis in the current study. For providers, the average age was 42.4 years old (standard deviation (SD) = 12.9, range 28 to 68). The majority practiced in urban settings, with one in a rural area and three in suburban areas. Among them, 13 were female, and 17 were White, with only 1 self-reported Black. For women, their mean age was 38.1 . Among these women, only five reported ever taking PrEP, and the rest were PrEP naïve. Almost half of the included women reported multiple partnerships in the past six months . Using the framework, we identified several specific pathways between communication and PrEP care implementation in primary care settings, including patient knowledge , therapeutic alliance , linkage to care , and decision making on PrEP care (PrEP implementation). We also situated these specific pathways within the broader context of intrapersonal , interpersonal , healthcare settings , community , and societal determinants  that may be associated with health outcomes and health utilization. We further identified a “discussion paradox” phenomenon regarding the initiation of the PrEP care and sexual wellness in primary care settings. We related these findings with the “Communication Pathway” Framework to collectively interplay how specific communication pathways and interpersonal relationships between health providers and their patients impacted PrEP care implementation in the primary care settings . We thoroughly explored how provider–patient communication can affect PrEP care implementation status in the primary care settings through several pathways, including patient knowledge , linkage to care , therapeutic alliance , and decision-making procedure  ,48,49. Studies showed that PrEP awareness and linkage to care were critical entry points into the PrEP cascade and served as the foundation for achieving protection from HIV with PrEP . To starI’d say (I have) a low to moderate risk (of HIV infection). I-I don’t use, um, condoms, but—and I-I do have multiple partners, but, um, they, based on kind of, like, the lifestyle, um, that I know that they-that they’re in, um, I believe that they’re also low risk, so, um, I don’t—and I try to—and I-I never really, like, specifically asked, but, um, I just assumed, based on the type of people that I, um, interact with.” . In the current studies, we found that the majority of the interviewed women (>90%) perceived themselves as having a low risk of HIV infection, despite frequently practicing high-risk sexual behaviors . For instance, a woman who had condomless sex with multiple sexual partners rated herself as “low to moderate” risk, as she explained: “Another woman shared a similar rationale about how to rate HIV risk for herself when she had unprotected casual sex, and she reported that she solely relied on her intuition to make a judgment on her sexual partner’s risk. I would say um, I had a little less than moderate (risk of HIV infection), not super light…but, um, I’m—I don’t use drugs, and I’m not using it to contact those people who use drugs. I tend to have, um, other casual, sexual partners, I do not use condoms, and I just assume that the other person is safe, even though I don’t truly have everything condom using. I just assume that the person is safe enough for me to not use it. But it’s not based on any proof, or it’s not like I check specific for HIV negative. Yeah. It’s just a judgement on my part. I don’t know if their HIV—status is negative.”““I’ve been trying to get it more with women but with only limited success. I’ve had limited success in getting people to—to accept it…I-I just haven’t—I haven’t got a lot of buy-in… definitely a lower perceived risk. accepting the medication is kind of like a-admitting to themselves, like, I can’t trust my boyfriend. I’ve had patients who’ve had a lot of trouble with pills. They’ll just say, ‘I don’t like pills in general.’ Or they find it to be large and—and uncomfortable and difficult to swallow.” .To engage patients in PrEP care, a risk assessment of their PrEP eligibility is an essential gateway. However, patients’ false impressions about their HIV risks may hinder providers’ ability to further explore patients’ PrEP candidacy; as one provider illustrated, “I don’t use any kind of standardized (PrEP eligibility screening) tool in my practice. Many of patients are either, um, not in any kind of a relationship at all, or, uh, in stable relationships that they’re not outside of the relationship.” . Furthermore, the dialogs about PrEP use often require open discussions about sexual activities or other risky behaviors . Some health providers made ungrounded assumptions about their patients’ risk profiles to avoid the discomfort. As a provider indicated In addition to the limited PrEP knowledge and reluctance to communicate sexual behaviors in healthcare settings, linkage to care was constrained by a lack of navigation assistance in the complex health system, especially for PrEP care that requests relatively intensive resources. About one-third of the interviewed providers mentioned the navigator would be great assistance to PrEP care in their practice. A PCP illustrated how the presence of a navigator could impact PrEP care implementation in healthcare settings, using an example by comparing the difference between her previous and current practice clinics. In my old practice, we had PrEP navigators that would actually kind of help on the back end of getting, um, you know, the PrEP app filled out, and any sort of, um, drug assistance programs that the patients might qualify for. But, that’s just not a resource that I have in my current practice. a lot of times if I am running into cost barriers, um, I do, um, end up just referring patients to a local practice that I know is much more capable of navigating that. it’s just a lot easier when you can kind of have all of that information right at the time of the visit.”“Although limited knowledge and suboptimal linkage to care may hinder PrEP care implementation, pathways via increasing patient knowledge and strengthening linkage to care could be achieved by clear and open communication between providers and patients. For instance, a PCP described her experience of smoothly introducing PrEP to her patients who had misconceptions about their own HIV risks. I think there is a misconception that only men who have sex with men should consider being on PrEP…it’s important when I talk to patients about it that, um, patients recognize that anyone is at risk for HIV who has any sexual activity. I pretty much talk about safe sex practices with all my patients regularly, not just at their health visits, but at many other visits as well… I don’t think I get immediate negative reactions from patients when I bring it up… I try to normalize the reaction by saying, you know, a lot of the messaging regarding PrEP has been to certain groups of people who we think might be more at risk for contracting HIV, but we know the risk of contracting HIV lies in anyone who has unprotected sex, which is why I bring it up with all my patients who are having unprotected sex.”“The therapeutic alliance refers to an alliance that involves a mutually trusted relationship between patients, health professionals, and significant others . A trustworthy alliance facilitates optimal health treatment outcomes . The allPrEP is a fantastic harm reduction strategy. Um, and as a HIV provider, um, I find it incredibly useful for, um, patients who, um, potentially have partners, uh, who are sero-discordant, um, or in sero-discordant relationships to protect the partner. people who maybe, um, engaged in a little bit riskier behavior. Um, so that we can, uh, keep them healthy. Yes, there are some possible risks with it, but overall, in a young, healthy individual, um, the benefits of it often significantly outweigh the risks.”“Furthermore, from patients’ perspectives, the therapeutic alliance in primary care settings facilitates them to become familiar with and accept PrEP use for their HIV prevention. A patient thoroughly described her experience from being suspicious to fully acceptable PrEP with the alliance formed: …he (my PCP) was the one that discussed (PrEP)… At that time, he (my HIV-positive husband) wasn’t doin’ too well, so he (my PCP) was like, ‘Well, he doesn’t like usin’ condoms. You know, you have to use protection.’ He (my PCP) told me about Truvada. And it upset my stomach a little bit when I first, ‘, started usin’ it, you know, but then, after a while, I felt better about takin’ it…No, it wasn’t embarrassing, no…but he (my PCP) was like, you know, ‘You need to take care of yourself. You know, you need to take care of him too. If you’re not using condoms, this is the best thing I could give you, but, also, use condoms.’ and he (my PCP) gave me a pamphlet and stuff like that for me to read while I was sitting there, and then he explained it to me even more. And I decided right there and then, ‘Okay, fine. I will take it (PrEP)’, cause he (my PCP) was very open about it. You know, like I said, if it came different, I probably would’ve felt uncomfortable.”““I’m not seeing as many younger patients. They (younger patients) benefit more from PrEP than others. I think, for my own perspective is for patients who are at higher risk for HIV, either because, uh, they, uh, because their lifestyle, uh, because they engage in sex, uh-uh, sex, or, uh, because they’ve had a history of STDs, uh, would be the ideal people to address PrEP with.” .On the other hand, some providers still hold biased perspectives regarding individuals with specific characteristics who will benefit from PrEP use. For instance, a provider said, “I think it’s very important for healthcare providers to always provide that information to all their patients, regardless of their so-called situations. people should never have your own bias or automatically assume if someone tells you something that’s the whole story. Cause not everyone fits in the same picture. But the most important thing is that they know that that option’s available.” .On the contrary, other providers tried to eliminate prejudice when screening patients for PrEP indications in their practice as a PCP said: “I don’t like just to spit out information. I like to be interactive and do the teach back, so I can, so I can fully, um, assess that they understand what’s goin’ on and what the, the medication’s about, how it works… I always have a pamphlet, um, showing the difference between them and the pill sizes…. When they can see the numbers, see the graph, it can help—it helps them understand a little bit better than me just verbally explaining.” . Effective communication strategies with respect can successfully facilitate a smooth decision-making process regarding PrEP use in the primary care settings, as a provider described: I confirm that they (the patients) are here for PrEP, but then I don’t go there right away. I just treat it as a regular visit to kind of just establish some, uh, rapport. Not to just immediately jump into, like, sexual health. Going through the appropriate steps, um, just getting a medical history first. Just check everything, hepatitis panel, gonorrhea, chlamydia, syphilis. we squeeze them in to be seen. Um, or I get, like, a prescription request, uh, request from the pharmacy.” .Another provider echoed this point using another example: ““I love prescribing PrEP. Because I find that, um, for one thing patients really trust you when you’re willing to kind of, um, meet them at that level, and have those kinds of conversations with them. I’ve always found that I develop much stronger, patient/clinician relationships with patients when I’m doing, um, PrEP. Um, a lot of times it-it might be patients who have previously had poor experiences in the healthcare system, or younger patients that just really haven’t had much of any experience in the healthcare system. Um, so it’s really nice to be able to develop those relationships with, uh, folks.” .Trust in providers and the health system facilitates emotional bonds and establishes collaborations between providers and patients, which is further enhanced by lines of communication . A PCP e“it was her (who initiated the discussion about PrEP). It was her that started the conversation due to the fact that I was from another clinic and she saw on my, uh, on my files that. And she asked me if I knew about PrEP. I didn’t feel, um, discriminated.  she encouraged you for you to be safe.” Similarly, patients also reported their experience about how the therapeutic alliance can be formed via non-discriminated and non-judgmental communications: “I don’t see it (PrEP) ever on anyone’s, um, medication list. Um, you know, personally how I would practice, and it would be—I would have to just kinda figure out how to bring it up in conversation about addressing that issue, um, of needing PrEP. I don’t really talk about people’s sexual history unless they have a sexual health complaint. I can’t speak for the physicians that—in my practice, um, you know, but I do find that the sexual history is often blank when reviewing a chart.” . Sexual history exploration is crucial for determining patients’ eligibility for PrEP use. However, conversations about sexual wellness and sexual history posed a challenge in healthcare settings reported by providers and patients. In our study, about one-third of providers expressed various concerns  about the discussion about the sexual history or sexual wellness. In particular, one PCP explained: “I do talk about sexuality. I don’t always get into every specific sexual practice that a patient may or may not do, and I-I think for me it’s on a need to know basis. I never wanna be in a space of being voyeuristic with one of my patients. I mean probably blind spots are a barrier. You know, assumptions of, oh, this person is 55. They’re not at risk. not even going-not even going to the questions about relationships and sexuality.” . Although some providers sought information about patients’ sexual activities, the exploration was not comprehensive enough to estimate patients’ actual risks for HIV infection: “you know, most of us probably don’t take a sexual history at every visit or do screening for risky sexual behavior, um, as often as we could. There’s a thousand other things to do in a visit when you’re seeing someone and they’re coming in with their, uh, laundry list of problems.” .In addition, competing clinical priorities served as another barrier to sexual history exploration. About one-third of providers reported either time or competing priorities hindered their PrEP care practice, as a PCP explained, “Neither has my primary care, neither, nor my OB-GYN has really never asked me about my relationship, my sexual history. I would imagine that might have something to do with the reason I’ve never heard of it (PrEP)… I guess I never, uh—you know, you don’t think about it (PrEP) until someone else brings it up to you about why they wouldn’t have done that.” . On the other hand, very few patients had discussed sexual history with their providers, and they expected their providers would initiate the sexual wellness-related topics. For instance, a patient mentioned, “I think we rely heavily that those that are, um, that-that women especially are seen by a GYN and that they will kind of take care of that. And it’s not something that we’ll necessarily need to deal with. I don’t know if it’s just uncomfortable to bring up or I know that a lot of patients that are higher risk for HIV or have partners with HIV go to the HIV clinic at the <School>. And that’s probably where a lot of physicians would refer them because they just might not be as comfortable prescribing PrEP.” . In the current study, we identified a “discussion paradox” in PCP, and patients considered that initiation of the topics regarding sexual wellness and PrEP eligibility screening should be the other side’s responsibility. This theme echoed how communication functions  led to the proximal and intermediate outcomes regarding PrEP use in primary care settings ,48,49. A“I would assume that doctors would bring it up and, like, inform their patients I just—I never heard of it, so I never brought it up, and the doctor also didn’t bring it up. maybe they(PCP) don’t know about it. Maybe they—maybe it’s not part of their standard practice to bring up unless the patient brings it up. maybe they don’t want to, like, offend patients by insinuating maybe that they’re promiscuous or, like, something like that. Those are the reasons I can think of why they wouldn’t bring it up. So I think definitely, like, feeling comfortable with the specific doctor and the specific practice would make me more likely to bring it (PrEP use) up.” .Another patient assumed several reasons  that their providers had not brought up PrEP use-related topics: Although the “paradox” has been consistently reported by providers and patients in the current study, some providers exerted great examples of how efficient communications could resolve the block smoothly. I had a new patient visit, um, a couple of days ago that, um—it was actually kinda easy because I asked—um, the patient had mentioned that he had a perianal strep infection. And so, um, you know, that was awkward for him, and-and it was a new patient visit, so I think that made it a little bit more awkward for him. And, um, that just kinda segued us into the discussion about sexual health, and I asked him, you know, “Have you heard of PrEP?” And he had been on it on the past. Um, asked him, you know, was he interested in restarting in it because he doesn’t have—he didn’t have a PCP. He was establishing PCP with me, and so he was-he was interested in restarting it., kind of an easy, um, discussion.”“On the other hand, the majority of interviewed patients indicated that they would be happy to discuss PrEP-related topics with their providers if the providers could bring up this topic; one of them explained: I never heard of it (PrEP) except for in ads about HIV. And I thought it was more for people who have HIV or for people who were very greatly at risk. So I didn’t really put myself into those categories. And, um, I was—but, yeah. I feel like I have heard of PrEP, like on T.V. I don’t feel uncomfortable or anything. I would do something like that if it was something I felt was beneficial for me. I mean, I guess it would just be them either bringing it up or bringing up, like—like, if they said, like, ‘Have you ever heard of PrEP?’ Or like if they say something like, ‘It seems you’re at risk for HIV.’ at that point, I would probably go, ‘Is there anything I can do about it?’ Or “What is PrEP?” Like, I guess those would be the two things that would make me to think about it.”“The current study is among pioneering research ,37,55 toThe interpersonal relationship and mutual trust between providers and patients enhance patients’ satisfaction and collaboration in health care settings to achieve sustainable care and optimal health outcomes ,60. FurtIn the current study, our data showed that patients usually considered themselves to have relatively low risks of HIV infection despite consuming high-risk behaviors. They generally had suboptimal PrEP awareness and misconceptions about PrEP candidacy . PCP reported time constraints and competing priorities  in clinical care compared with PrEP consultation and PrEP care. They also tended to make ungrounded assumptions about their patients’ risk profiles  and adverse reactions  from their patients about the PrEP discussions at the primary care settings. These barriers may block the pathways via proximal  and intermediate outcomes  from communication functions to health utilization outcomes. On the other hand, our data revealed that effective and strategic communications  could remove these blocks along the pathways. Our findings resonate with other researchers’ work ,64,65. FAs other researchers indicated, discussions regarding sexual history and PrEP eligibility posed a challenge in primary care settings ,66. Our There are several strengths in the current study. First of all, we analyzed the data based upon the “Communication Pathway” Framework. Unlike most available research focused on facilitators and barriers along the PrEP care cascade ,37, we eSeveral caveats in the current study have been acknowledged, and we must interpret the findings cautiously. First, we employed a convenience sample strategy to recruit PCP who practice in NYS and women who reside in NYS. The sampling scheme may be subject to selection biases, as only individuals who were interested in PrEP would participate. However, individuals unfamiliar with PrEP or HIV prevention strategies may bear higher risks of HIV infection than those recruited in the current study. Therefore, results from the current study may not be generalizable to providers and patients living in other States, especially in States that share top-heavy burdens in HIV epidemics . We callOur findings indicate that both health providers and patients need skills and assistance to express their points of view while incorporating others’ perspectives to increase knowledge and linkage to essential care and establish a reliable patient–provider alliance with shared understanding. A PrEP care navigation and assistance system or a PrEP screening tool may fill the gaps regarding PrEP eligibility screening and consultation facilitation in primary care settings. The future effect would benefit from facilitating PrEP discussion, engagement, and monitoring for all stakeholders in primary care settings.


Objectives: To investigate the experience of playing the harmonicafor individuals with COPD.Methods: A qualitative, phenomenological study using semi-structuredinterviews and reflexive thematic analysis.Results: Eight people living with COPD  wererecruited, who had attended at least six weeks of harmonica group sessions,either face-to-face prior to the COVID-19 pandemic or remotely. Five themes weregenerated. Themes included ‘hard in the beginning’, ‘holding the condition’,‘breathing control’, ‘gives you a high’ and ‘needing the Zoom class’.Discussion: Playing the harmonica with COPD is difficult at first,particularly drawing a breath through the harmonica. With practice, experiencein a fun activity and quality teaching, individuals were able to become moreattuned and embodied with their breathing, and playing the harmonica offered abreathing control strategy. Songs, rather than breathing, became the focus, andparticipants were able to escape living with respiratory disease when playing.Participants reported the harmonica helped mucous expectoration. The group was apriority in the weekly lives of participants, even though the ‘buzz’ of beingpart of a group was lost when participating online. Further mechanistic studiesand randomised controlled trials are needed to investigate the biopsychosocialbenefits of playing the harmonica with COPD. Evidence-based interventions are available to help treat and manage diseaseburden, such as flu and pneumonia vaccinations, smoking cessation, inhaledtherapies, pulmonary rehabilitation (PR) and lung volume reduction.4 However, patient adherence toCOPD therapies which require significant patient engagement, including smokingcessation, using inhaled medication, and participating in pulmonary rehabilitation,is suboptimal.8Chronic Obstructive Pulmonary Disease (COPD) is one of the largest causes ofmorbidity and mortality globally. Singing for Lung Health (SLH) is an arts-in-health intervention with evidencefor improving physical health in respiratory disease. Other arts-in-health interventions such as dancing and other music therapiesmaybe appropriate intervention choices for individuals with chronic lungdiseases.13 The harmonica is a hand-held instrument requiring the player todraw and blow against resistance in order to produce a tune. To draw breath refersto the action of inhaling while the mouth is sealed over the harmonica and blowingrefers to the action of exhaling into the harmonica. When harmonica playing has beentrialled in combination with PR compared to participating in PR only, nostatistically significant differences in respiratory muscle pressures, exercisecapacity or quality of life were observed. The authors stated that the lack of statistical differences seen in theseoutcomes may be due to not having played the harmonica with sufficient dosing andthe small sample size. Inspiratory muscle training effects are also expected from PR. Hart et al. performed a cohort study with individuals with COPD who participated in12 weeks of harmonica sessions. These individuals gained clinically andstatistically significant improvements in their respiratory muscle strength (PImaxmean difference = 15.4 cm H20 (P: 0.0017), PEmax mean difference = 14.4 cm H20 (P: 0.0061)) and walking distance ), but there was no control group for comparison. The limited quantitativeevidence available suggests that playing the harmonica has potential clinical valueas a participatory arts intervention for people living with COPD. The interventionmay also increase intrinsic motivation to adhere to beneficial self-managementactivity as an enjoyable hobby. However, experiences of playing the harmonica withCOPD are not known. The purpose of this study was to investigate the experience ofplaying the harmonica for individuals who are part of a harmonica group specificallycreated for people living with chronic respiratory disease. Experiences of beingpart of a group included both face-to-face participation before COVID-19 and thechange to remote group delivery because of the pandemic.Participatory arts-in-health interventions such as singing, dancing and theatre(performing arts) are recognised as being beneficial for health outcomes by theWorld Health Organisation. and also by Van Manen with a view to practice, with the intent of caring for individuals withrespiratory disease.This was a qualitative study using an interpretivist, phenomenological stance.The phenomenology was influenced by Merleau-Ponty regarding corporeality, withthe body as a perceiver and actorIndividuals were recruited from a harmonica group in the UK, consisting ofindividuals living with different chronic respiratory diseases. Participantinformation sheets were given to all individuals in the group diagnosed withCOPD who had participated in at least six weekly sessions. Interestedindividuals provided informed consent. AL had no previous relationship withrecruited participants. Ethical approval for the project was obtained by BrunelUniversity London College of Health, Medicine and Life Sciences Research EthicsCommittee . Out of a regular harmonica groupattendance of 30 individuals, 15 had known COPD and were approached to enter thestudy. Of those recruited, five participants reported previous participation inPR or maintenance exercise programmes, and all participants reportedparticipation in SLH groups.23 Respondent validation orpeer checking of themes was not performed because this was deemed notappropriate for the interpretivist nature of the research. The harmonica groupleader assisted in recruitment but was not involved in the analysis of theinterviews.Semi-structured interviews were performed by AL via Zoom or telephone dependingon participant preference. The semi-structured interview guide is provided inthe online supplement. Interviews were performed between January and April 2021.Interviews were transcribed verbatim into Microsoft Word, and reflexiveinductive thematic analysis was performed using Microsoft Word and Excel,including the stages of data familiarisation, coding, generating initial themes,reviewing and defining themes and writing the report.Groups were set up by an occupational therapist (JW) and a musician (CS) who havepreviously been trained to run groups specifically for individuals with chronicrespiratory disease (CRD) by the British Lung Foundation. All weekly harmonicasessions consisted of warm-up exercises and performing different songsspecifically chosen by the harmonica group leader to be appropriate forindividuals who may become breathless. Harmonica sessions lasted 1 hour perweek. All harmonica sessions were run via Zoom at the time of recruitmentbecause of COVID-19 restrictions.Eight participants  were recruited. Interviews lasted anaverage of 49 min (Range: 40–64 min). Five themes were generated from thematicanalysis which included ‘Hard in the beginning’, ‘Holding the condition’, ‘Breathingcontrol’, ‘Gives you a high’ and ‘Needing the Zoom class’. Each theme will bepresented below with example quotes and analysis. The themes in bold text andsubthemes in red text are presented in the thematic map . Further‘first you find it hard but then once you get to realise how to breatheproperly you’re actually playing a song without realising and you arenot feeling breathless afterwards’Participants reported that altering their breathing in combination with trying tohit the right note was difficult. Many found that they were putting too mucheffort in to make the sound.P1, page 3, line 53, played harmonica since 2018.‘When I first started and found it so hard, I couldn’t breathe to getenough breath to blow the harmonica, until I was shown how to doit’.There is a skill playing the Harmonica properly, and the skill can be judged bythe ability to play a tune, but also in combination with the ability to not gettoo breathless.P2, page 3, line 8, played harmonica since 2018.‘Blowing is okay, it's drawing, and if you've got to do it very quickly,you can't really take a good breath you know what I mean, when you'rebreathing, in an out, it is much harder to do it through theharmonica’.This suggests that playing the harmonica correctly is not intuitive forindividuals with breathing difficulties and it requires a particular way ofbreathing to activate the musical notes. The main difficulty was drawing thebreath on the inhale to overcome the resistance of the harmonica:P6 page 3 line 58, played the harmonica for 2 months.‘because I'm drawing too much in at once, or I'm not breathing out enoughbecause you’ve got to breathe out to draw in’.When breathing in against the resistance of the harmonica (drawing the breath),it disrupts the normal un-phonated breathing pattern. This is a challenge forindividuals with COPD.P8 page 4 line 86, played the harmonica for 2 months.Participants reported that they felt playing the harmonica regularly was a waythat they were able to give their lungs a work-out and hold the condition,preventing them from worsening.‘I think it’s the structure that he puts in it, and he tells us you know how todo it, and to breathe, and to get the best out of our breathing. But I honestlydon't think I would be in the position I am now if I was still coughing and onlyon the medication that I was on, I think I would be in pretty dire straits’.P6 page 8 line 174, played the harmonica for 2 months.Playing the harmonica can act as a therapeutic intervention with perceived healthbenefits. Playing the harmonica was thought to be a way of preventing symptomsworsening.‘It’s making me exercise when perhaps I wouldn't do those exercises, because youknow when I take my ventolin in the morning, because of harmonica, I now dotheir exercises for breathing and that helps me take my ventolin in my inhalerin the morning…Because you’ve gotta build up your lungs and capacity becauseyou’ve lost you know, you’re losing it, so I want to keep it and I can’t getwhat i’ve lost, that, but I want to keep it at the level how I am at the moment.I don't wanna have to go onto oxygen like some of the ladies have, so I’mfighting it’.P8 page 9 line 211, played the harmonica for 2 months.‘forget I've got any chest problems when I'm playing the harmonica. Ifind the trainers and the flutter not as easy for me, I'm on the very,the thing with the spring, I'm on the very low level, I can't seem toget up, so it's strange that, put the harmonica into my lips and I'mfine, yes I do get out of breath (if) I played a lot, but that's tomyself. Because I play different things to the class but it's not, Ifeel like it's not a chore, the flutter and this the other one, I find Idon't do them regularly. I probably don't need to because of using thatharmonica’.This individual commented how playing the harmonica is a way of potentiallypreventing lung function decline and improving inhaler technique. The harmonicacould be used as a training aid. This is understandable because both pressurisedmetred dose inhalers and the harmonica require coordination of the device andsufficient inhalation effort. Participants reported that playing the harmonicahelped to clear mucous off their chest which helped in holding the condition ona day-to-day basis. The participant below compares using the harmonica withother aids supporting the management of their COPD, including an inspiratorymuscle training device and a positive expiratory pressure (PEP) device. Theypreferred playing the harmonica compared to other devices:P4 page 8 line 184, played the harmonica since 2017.‘it's a lot lighter, it's like I said before, it's slightly whispering.It's like you whispering in, it's like you're actually whispering intoyour harmonica so it's not as hard….when you realise it's coming, justcoming from your throat area, and not down here, you tend to just blowinto it gently’.A sense of needing to control the breath to play the harmonica or gaining a senseof controlled breathing through playing the harmonica was a central theme inthis study. Playing the harmonica was thought of as breathing differently, andoften a way to forget about being breathless at all.P1 page 5 line 110, played the harmonica since 2018.‘I forget that I have breathing problems when I do it, when I play,that’s what it means to me’.Breathing ‘from your throat’ and gently appears to contrast with the commonlyused ‘diaphragmatic breathing’ exercise technique more commonly to individualswith COPD.P3 page 14 line 321, played the harmonica since 2017.Playing the harmonica is a way of living without respiratory disease and atemporary respite from symptoms for some.‘It's making your head work use your lungs, and I think that's what wetend to miss out, that connection, when you panic, and you can'tbreathe, and you panic and that's it. So there's no control up here atall, it is just one overriding panic, so doing anything that can helpyou ease that control and use that control, it’s got to be a fantasticthing for anybody with their respiratory problem’.Through music, individuals are becoming more embodied with their breathing in atask where the product of action is not their breath, but the tune. This tunehas no disease attributed to it and so participants lose focus on their own disease.P5 page 19 line 441, played the harmonica since 2017.‘You've got to get your breath right in it, when you're following thenotes. Because it's so easy to go off to get the wrong note. Soconcentration is very, is very, is another element… I'm going straightin on the notes not worrying about the breathing, I'm trying to get anotes right’.Playing the harmonica shifts the cognitive focus on using the breathconstructively as a tool to enable the sound to be heard. There appears to be adegree of breathing control which can be achieved and mastered, and breathingcontrol appeared to be determined by the ability to concentrate on playing theright notes.P3 page 18 line 387, played the harmonica since 2017.‘if it's clear, if it's what I want it to be, and how I feel it shouldsound, and all how I know it sounds when you know a tune, you knowexactly how it should sound. When I achieve that, then I know that mybreathing is good’.Participants get feedback from the tune regarding the quality of their breathing:P5 page 10 line 227, played the harmonica since 2017.This participant highlights the important association between the aesthetics ofthe performance of harmonica playing and the quality of breathing. If theperformance sounds good, then the participant understood themselves to bebreathing well.‘I'm about 70% of normal, but you don't need an awful lot of power toplay the harmonica from what I've picked up. I may be wrong, but youdon't blow in really hard. Not like blowing the trumpet where you know,gotta have a lot of breath, so that's more so, than singing, whereyou've got to perhaps use a lot more of your body….Whereas, harmonicais, go, go for it’.With more experience playing the harmonica, individuals commented that breathingwhilst playing the harmonica felt significantly different to breathing duringexertion or singing.‘When you're young you know you don't think about your breathing it justhappens doesn't it, or when you can't do it, it’s quite frightening, youknow it really is, you think, you know, what's happening here? Now, Inow know how to control it a lot better, and how to get over theseshortness of breath times, you know. And I think this has helped, theharmonica, because it pushes me, the singing as I say always sung, soit's not too much of an effort’.P4 page 12 line 279, played the harmonica since 2017.P6 page 16 line 378, played the harmonica for 2 months.‘I found the singing better really because although it might make mecough, I do that more, lungs are more open after the singing, whereaswith the harmonica I feel like my chest is quite tight, so I feel thesinging is doing my lungs more good really, and I feel I have a betterresult after singing lesson than the harmonica’.Not everyone forgot about their breathing or found it easier when playing theharmonica. The participant below had not played the harmonica for years likesome of the others:P7 page 5 line 109, played the harmonica for 2 months.The difference in experience of symptoms between singing and playing theharmonica could be due to differences in the breathing techniques used, but alsothe differences between the sound being made by one’s own body compared to aninstrument.‘What a buzz, there's nothing like it at all. You know we come away, weusually go to the pub afterwards because it’s nice, you come awaybecause you're still on a high’.Playing the harmonica is fun, it is enjoyable and it gives people a ‘buzz’.Players are left on a ‘high’, full of positivity. The ‘high’ feeling is a senseof being proud in achievement, gaining a new skill, having self-belief and beingable to perform a tune in a world outside of disease, without anxiety.‘When I play that, you know, you feel so comfortable in yourself youactually feel comfortable in yourself because you sitting, that, it'slike you're in a world of your own, and that’s basically what it is. Westart to feel comfortable in your own body and relax and you are morerelaxed in your own body you know. And you get more confident as well.The more that you play the more confident you get’.P5 page 15 line 374, played the harmonica since 2017.P1 page 14 line 335, played the harmonica since 2018.‘(Name) makes it very entertaining and at the end of the day I can get abit of a tune out of the harmonica, all be it not very good, but it'sjust it's just good fun, and I feel that because I'm struggling too withthe in breaths I feel that it's maybe doing some good because I'mbreathing out to breathe in through this, and it is, you have to make abit more of an effort. I enjoy it, and that's the reason why you dosomething’.Playing the harmonica improves how people feel about themselves, which is relatedto being comfortable in their own bodies. Part of being on a ‘high’ is theescapism of being enthralled by the charismatic teacher.P6 page 6 line 121, played the harmonica for 2 months.Having a charismatic leader who makes sessions fun is a reason to continueattending the group. It is not surprising that individuals had been in the groupfor years.‘You're in a group in a room it's more, it can be more embarrassing Isuppose, if you go wrong, whereas when you're online he always saysdon't worry it's just me’.Participants discussed the necessity, advantages and disadvantages of playing theharmonica online. Being part of the online group became a priority in theirweekly schedule.‘Harmonica is brilliant, and it's, let's keep the fact it's keeping usalive you know, with the hope that you know we're going to be together,we're going to be doing it again and will be physically togetheragain’.P4 page 13 line 311, played the harmonica since 2017.P3 page 8 line 178, played the harmonica since 2017.‘I miss that banter…it's just missed that, that impromptu chatter andjust being with people I think makes an awful difference. It makesreally good difference. But the Zoom is extremely good considering ourcircumstances you know. If we didn't have all this technology we wouldbe in terrible states, I mean I would be here I wouldn't have spoken toanybody for nearly a year’.The quote above illustrates the temporal and social relatedness of the experienceof playing the harmonica online. It enables people to look to their future withpositivity, at the same time reflecting positively on previous experiences ofbeing physically together with others. The meaning of weekly group attendancetranscends being in the moment of the session. However, others felt isolated byonline participation and missed the genuine face-to-face group contact:P6 page 9 line 209, playing the harmonica for 2 months.The following discussion further explores the thematic analysis in relation to theinterpreted phenomenological and clinical meaning, and with reference to previouspublished literature. Discussion content has been structured within the meaning ofbeing ‘Attuned to breathing’, ‘A social need’ and using the harmonica as ‘Anadjunct’. We then discuss the strengths and limitations of the study.29 However, there is very limited quantitative data and noqualitative data from harmonica trials to the authors’ knowledge. The melodicamay have some similarities with the harmonica regarding breathing control.Okamoto et al. investigated the use of a melodica used to perform exhaled breathingexercises in addition to PR in a randomised 4-week crossover trial with thecontrol group performing additional leisure time activities such as reading orwatching television. Melodica playing was associated with improvements in peakexpiratory flow (1.53 L/s to 2.47 L/s) and FEV1% (52.8–64.94). Theauthors claim that these improvements were possibly attributed to the fact thatexpiratory lung volume was easier to control with practice due to the soundfeedback provided by the instrument. However, the sample size of this study wasvery small with data analysed from 13 out of 21 participants and therefore nogeneralisable conclusions can be drawn. Participants in our study felt that thealtered breathing was helping to clear the chest and helping to prevent thedisease worsening in lieu of access to other interventions and face-to-facecheck-ups. The sense of achievement from being able to perform a tune wasempowering and left participants feeling ‘high’. Playing the harmonica appearedto be more difficult for those who had learnt over Zoom and perhaps were findingplaying, and therefore breathing during the class difficult. However, it ispossible that the newcomers to the groups were able to discuss this experiencein the present as more meaningful compared to others reflecting on theexperience with recall bias. The difficulty in the beginning was a sharedexperience, but with practice, playing the harmonica becomes habitual and lessdemanding mentally and physically. From a phenomenological perspective,temporality is part of the lived experience in any phenomenon, and withharmonica playing online, it offered the participants hope, in looking forwardto being-with-others again.This qualitative analysis explored the experiences of individuals playing theharmonica with COPD. No previous investigation of harmonica playing has beenexplored in individuals with COPD. The main theme from the analysis was thatplaying the harmonica both requires and provides a sense of breathing control.This is because it is necessary to breathe differently through the harmonicawith concentration on connecting the breathing with producing sound. Musictherapy has shown to be effective at improving breathlessness for individualswith COPD. The impact of change in social life because of COVID-19 has previouslybeen reported.32 Singing for Lung Health group participation has beenshown to be successfully adapted to online delivery with positive health outcomes. However, it is not clear to what extent clinical improvements are due tothe social nature of music therapy or the art of music making itself. Furthertrials are needed to compare face-to-face with remote delivery of arts-in-healthgroups.COVID-19 has meant that many of our social lives have been reliant on onlinecommunication with others. Change in lifestyles was particularly amplified forindividuals with COPD who were part of a clinically vulnerable group who weretold to shield from others to reduce their risk of contracting COVID-19. both of which make playing harmonica in a group difficult. There has beena reported 50% reduction in COPD admissions during COVID-19. The study authors state that this is likely associated with a reductionin viral infections, because of social distancing measures, which triggerexacerbations and lead to hospitalisations. However, the authors alsoacknowledge that fear and anxiety may have also contributed to the reduction inadmissions.The social lifeline that the Zoom class is offering may continue for some time.With COVID-19 still present, many individuals with respiratory disease may bewary of returning to groups. Indeed, the majority of individuals withrespiratory disease are keen to continue social distancing and mask wearing,Providing Zoom-based options for group-based interventions may not only providethe social lifeline for those with access to such technology, as describedabove, but also reduce infection risk. Furthermore the use of PEP devices in COPD improves health outcomes suchas symptom reduction and improvements in exercise capacity, respiratory pressures and is recommended in national guidelines. Playing the harmonica may have similar effects to performing pursed-lipbreathing which is also a recommended technique to help improve breathlessnessfor individuals with COPD. Participants repeatedly commented that drawing was harder than blowinginto the harmonica and that with blowing there was a sense of release or ease,particularly by those with more experience. Further mechanistic studies arewarranted to investigate the potential of the harmonica as a muscle trainer anairway clearance adjunct.The resistance of the harmonica at the mouth means that increased pressures arelikely needed to be generated on the inhalation and exhalation to trigger andmaintain flow for the breath. From a rehabilitation perspective, the harmonicaappears to act as an inspiratory muscle trainer on the inspiratory drawingaction; and as a PEP device when blowing into the harmonica. Inspiratory muscletraining has been shown to be effective to improve respiratory muscle strengthand reduce dyspnoea in individuals with COPD.This study provides in-depth experiences of individuals who are both veryexperienced and relatively novice at playing the harmonica. This enabled richand varied accounts of the lived experiences of harmonica playing. However, weacknowledge that experiences of participants who have previously participated inharmonica groups, but subsequently dropped out, were not gained. Therefore,discussions here may be more biased to positive experiences. Nevertheless, theopen-ended nature of questioning in combination with the fact that AL waspreviously unknown to the participants enabled individuals to be forthright inverbalising not only perceived benefits but also detailing difficultiesexperienced. Further limitations exist due to the research being performedduring the COVID-19 pandemic. New members to the group only had experience ofonline group participation without comparison to face-to-face sessions.The sample of participants was unique. Many had combined previous experiences ofboth participating in PR and SLH groups. This could limit the transferability ofthe findings to those individuals who have not previously participated ingroup-based interventions. However, these combined experiences enabled a greaterreflection of the meaning of harmonica playing in context with otherinterventions which is valuable for clinicians and patients to understand. Thethemes of ‘Gives you a high’ and ‘Needing the Zoom class’ associated with the‘buzz’ social activities give, are likely effects independent of the group and the type of activity, whether that be harmonica or anyother group-based activity. However, these themes may reduce the above-mentionedpotential selection bias, as individuals who enjoy the social aspect are likelyto continue to play the harmonica, even without having experienced any positiverespiratory effects. Further feasibility studies and then adequately poweredRCTs investigating social and clinical outcomes of face-to-face and onlineharmonica groups for individuals with CRD are now warranted.Playing the harmonica is a novel intervention for individuals living with CRD. Thisstudy investigated the lived experiences of individuals playing the harmonica in agroup of others living with CRD. Participants experienced breathing differentlybecause of playing the harmonica. Breathing with the harmonica, particularly duringinspiration, was hard at first, but with experience, playing the harmonica offeredcontrol of their breathing, in a fun, social activity which made them feel they werepreventing their disease from worsening. Further mechanistic and RCTs are warrantedto determine the clinical value of harmonica playing when living with COPD.Click here for additional data file.Supplemental Material, sj-pdf-1-crd-10.1177_14799731221083315 for Playing theharmonica with chronic obstructive pulmonary disease. A qualitative study byJasara N. Hogan, Alexis M. Garcia, Rachel L. Tomko, Lindsay M. Squeglia, andJulianne C. Flanagan in Journal of Interpersonal Violence