Produce prescriptions that provide vouchers to individuals to purchase fresh FVs at a specified retail outlet have the potential to positively impact food security status, diet, and chronic disease risk. However, maximizing program participation is vital to ensuring program success. This research describes motivators, barriers, and support for participation in a child produce prescription program among a population of Native Hawaiian and Other Pacific Islanders, who are underrepresented in this field of research. This qualitative grounded theory study was nestled within a quasi-experimental pilot intervention trial and included semi-structured interviews with pediatric program participants. Twenty-five interviews were conducted, which represented one-third of program participants. The top support factors for program participation included: ease of voucher use, program convenience, health center/pediatrician endorsement and positive communications with farmers’ market vendors. Key motivators for program participation were produce enjoyment, child support, financial support, and positive impacts on family. Three themes emerged consistently as barriers to participation amongst participants, (1) difficult use of vouchers, (2) conflicting schedules, and (3) online market concerns. (4) Conclusions: This research offers insight into policy implications as the number of produce prescription programs has grown. These findings suggest that key program design characteristics can enhance and support program participation. Clinical and community-based interventions to increase fruit and vegetable (FV) intake, while reducing food insecurity, in children have had limited success in improving diet ,2. A proMaximizing participation is an important first step in determining the effect of the FV voucher program for families. For example, in Arizona, a WIC program observed inconsistent redemption rates for WIC FV vouchers, so researchers sought to identify factors that influenced participation, barriers, and attitudes around redemption . The resThe KPRx program is the result of a collaboration between the Waianae Coast Comprehensive Health Center (WCCHC) Pediatric Department, WCCHC Health Promotion Department, and University of Hawai‘i at Mānoa researchers . KPRx waThe KPRx feasibility program provided $24 in vouchers to obtain FV each month for three months, but while parents expressed their excitement about and satisfaction with the program, only 23% of participants completed the program . As a reThe pilot study aimed to quantify the effect of the KPRx program on household food insecurity status and FV consumption, as well as identify mechanisms to improve program participation. The purpose of this qualitative research was to understand factors that KPRx participants perceive as motivators, barriers, and support for KPRx participation in a population of Native Hawaiian and Other Pacific Islanders, who are underrepresented in this field of research.This qualitative grounded theory study was nestled within the KPRx pilot intervention trial. Participants were referred to the KPRx pilot study by their WCCHC pediatrician. Pediatricians screened patients for food insecurity using a validated 2-question tool . PatientConsent and assent (children ≥ eight years of age) were obtained prior to participation in KPRx activities, this included consent to be interviewed. Parents/caregivers were invited to participate in the KPRx exit interview once their child had been enrolled in KPRx for at least six months. Parents/caregivers were offered a $25 gift card as a token of appreciation for participation. The research protocol was approved by the Institutional Review Board at the Waianae Coast Comprehensive Health Center (No. 00006399).The one-on-one interviews were conducted using open-ended questions developed in the feasibility evaluation  18]. Th. Th18]. Interviews were conducted between 2021 and 2022 via phone at time convenient to the participant. Participants completed a brief demographic questionnaire  at enrollment in the KPRx study. Interviews were conducted and recorded by the study principal investigator who had little interaction with participants throughout the duration of the pilot study, to limit bias in responses. The principal investigator has a good understanding of the community and Native Hawaiian and other Pacific Islander culture, having worked in the target community for over 10 years. Interviews lasted between 30 and 60 min. Audio recordings were transcribed verbatim using an audio transcription service. KPRx research staff reviewed transcripts for accuracy. As interviews were conducted, research staff performed reviews of data. Data collection was ceased when saturation was achieved .Two trained members of the research team analyzed the interview transcripts using a grounded theory approach . Each ren = 25). The average age of participating children was nine years (ranging from two to 18 years). Ninety-two percent (n = 31) of the child participants were of Native Hawaiian or Other Pacific Islander race. Over half of the interviewees received SNAP (food stamp) benefits (n = 18) and 68% (n = 17) had completed the KPRx program, defined as having redeemed vouchers for all six months of the program. A total of 95 KPRx study participants were eligible to complete an exit interview (enrolled for at least six months). Interviews were conducted with 25 parents/caregivers, representing 34 children who participated in the KPRx pilot study (nine interviewees had two children enrolled in the KPRx program). All parents/caregivers were women (The top support factors for program participation included: (1) ease of voucher use, (2) program convenience, (3) health center/pediatrician endorsement and (4) positive communications with farmers’ market vendors.n = 25). Specific examples of what made the vouchers easy to use included that they vouchers were treated as cash and were welcomed by all vendors. One participant shared, “Everybody in the marketplace accepted it. And they were happy and everybody treated you, you know, nicely. Just like as if you were giving them money.”All participants shared that the ease of use of the vouchers supported their program participation, this was mentioned 35 times across interviews , not having to wait in line at the farmers’ market to get the vouchers, and the ability to redeem at several different market vendors were some of the most convenient characteristics. One participant shared, “To me, it’s easy to access, or it’s easy to really just go in, and especially picking up the coupons…It’s not long line because every time I go, it’s already ready. By saying that, they are organized” and another shared: “Being able to just go to the market and pick it up, and then from whatever tent they were in, and then my kids could just go and use it on their own. It was just like money.”Ten of the twenty-five participants mentioned a support for program participation was through endorsement by the health center and the pediatrician specifically, mentioned 11 times. One participant shared, “The doctor recommended us and I was like why not. It helps me get vegetables, so I was like okay, why not, we’ll see what this program is about.” And another shared, “We actually was referred by my daughter’s doctor and that’s what got us involved in participating.”n = 8) mentioned specifically that the interactions with the vendors supported participation (cited nine times). Most of the comments in this theme were around vendors helping participants to utilize the full voucher benefit. For example, if the voucher value was five dollars and the participant selected four dollars in FV, the vendor would help the participant in identifying what they could get for one dollar to maximize their benefits. One participant shared, “The vendors, they were very helpful. If I didn’t, sometimes it was a specific thing, if it was too high, they would put something else they would add on top of, like a banana. And that’s how, because I couldn’t break the $5 [voucher], they would put on more stuff for me so I could use that certain amount up.”Participants  produce enjoyment, (2) child support, (3) financial support, and (4) positive familial effect.More than half (16 out of 25) interviewees mentioned produce enjoyment 18 times across the interviews. Participants enjoyed the process of purchasing and picking the produce as well as the availability and accessibility of the produce. Interviewees shared that children were excited to purchase FV. For example, a participant stated, “So, I know my son is very enthusiastic, every time I tell him it’s time to go pick up his vouchers, and he likes picking out the fruit and vegetables for us.” Participants enjoyed the availability and accessibility of produce at the farmers market, stating, “… it’s harder to get fruits and veggies with all the prices going up, or even just getting those type[s] of fruits and vegetables is more in the stores. Sometimes it’s limited, too. There’s none at the stores. So it’s easier to get at the market”.The second frequently cited motivator was the support provided to the child, which was mentioned 17 times by 15 participants. Some participants noted the program was “[a] great way of allowing [my daughter] to try different types of vegetables and fruits”. Parents also perceived increased FV consumption as “support[ing] a healthier lifestyle”. One user stated, “I chose to participate in the program so my son would eat healthier. He would have more options on vegetables, fruits, so he could learn more about the different types of vegetables and fruits that you guys offered in the program.”One participant was motivated to join the program to support their child’s community engagement. She, and another, mentioned, “I was just kind of curious to see what kind of resources they would have. And what kind of ways they would’ve had the community get engaged, especially with the younger kids.” Another shared, “I thought that it was a good program for the kids, just because it promoted eating healthier and that they got to try all different types of vegetables and fruits that they usually don’t try. And I like how the program, how they got those bags with the stuff inside to make the vegetables. I like those and the recipes that it came with, all the information. I thought that was cute.”Financial support was the third largest program motivator, mentioned 21 times by 12 people. Some users mentioned that it increased FV affordability, “Anytime we can get some fresh fruits and vegetables at a good cost, that’s free. Right? That’s awesome.” Others mentioned that the help purchasing food freed the financial burden to purchase other household necessities. For example, “It was easy and very helpful, because toward the end of the month, when you don’t have enough food, that helped out a lot. It helped out with just buying the necessities that we need, besides groceries, other things that it could help us with in the household.” One participant said it helped the family provide food with the financial burdens of the COVID-19 pandemic, “I know it would benefit us by helping, because it was kind of tight with the budget, especially dependent on the COVID and all that, and being out of work for certain people in our household. So that help food-wise, a whole bunch actually helps.”Twelve participants mentioned the positive family effect of the program, which came up 17 times across interviews. One person noted that they as a parent were also able to enjoy the benefits produce, saying, “I was able to eat with them [my family]”. Another person mentioned that it gave the family something to do together, “ … going to the farmer’s market actually gave us a reason to go out on Saturday and be a part of the community.”Three themes emerged consistently as barriers to participation amongst participants. In order of frequency, barriers were the (1) difficult use of vouchers, (2) conflicting schedules, and (3) online market concerns.Thirteen participants mentioned some difficulty in using the vouchers 30 times across the interviews. Factors that made the vouchers difficult to use as perceived by participants ranged. Some participants thought that the expiration dates complicated their use. Participants said, “I’d have to buy things that I wouldn’t want to buy before the thing [voucher] would expired.”. Another shared, “I was getting confused with the expiration date on the bottom. I thought when I could use it was the expiration date.”Although positive vendor communication did help, some participants found the need to use the whole voucher made the vouchers difficult to use. For example, “because the vouchers were in whole dollar increments, it made it a little difficult.” Other concerns included wanting to use the vouchers for products that were not FV.A conflicting schedule between participants and the market was mentioned by 9 participants and referenced 11 times. One participant stated, “just organizing our own schedule as a family was the issue”. Other participants mentioned that Saturdays were normally filled with obligations that could not be done during the work week. Some had other familial obligations, “Sometimes I really wanted to get the vegetables but I had to choose. Do I go to my son’s game or to this family event or do I pick up my vegetables.” Another shared, “It was just harder for me if we had appointments on Saturdays and we had to drive all the way to town, there was no way for us to be able to go to the farmer’s market. I mean, I don’t know if it is really, I mean, most people have time I am supposing on Saturday mornings, but for working parents during the week, it is just, Saturday is the only day for them to get stuff done.”The final and third most noted barrier to participation was online market concerns. Online market concerns were referenced 7 times by 6 participants. Common concerns with the online market included not getting to make produce selections, in terms of preference and quality selection, also noting that the online option had a smaller selection of produce, “there was not as much to choose from as if you went to the farmer’s market…” One person also mentioned, “But one sort of onion, which I know they have the purple and the regular onions, but we like the purple ones. They just dropped off like a gang load of the regular ones, And… just being able to choose what we like. I wouldn’t have chosen the oranges. I would’ve probably went with some green onions. So just being able to choose.”Participants offered some specific recommendations to improve the program for the future, these included adjusting the voucher values and increasing advertisement for the program.Most participants found the value of the vouchers value sufficient. One participant voiced, “I think that was a perfect amount. I’d be greedy if I asked for more”. Though sufficient, a consistent recommendation was to provide the voucher in smaller increments. Smaller values suggestions were referenced 5 times by 4 participants. Vouchers were available in five and ten-dollar increments. One participant mentioned failing to use the full voucher value, stating, “I guess when something was half of a dollar, then we had to give them the whole dollar. Or they didn’t give change back, that’s why. So we kind of lost out on that part of it.” Other participants also suggested smaller increment amounts, “maybe just being able to split it change-wise.”More advertisement on the program was referenced three times throughout participant exit interviews. One participant “never knew it existed”. Another expressed that they would share about the program with friends and family who did not know about it, “No, but I shared it with all my friends, and I think a lot of them would try and see if they could get into the program as well. As I shared with many of my friends, who were going through some difficulties as well with the pandemic and losing their job, they said, “Oh.” They didn’t know they had the program.”This qualitative research study gathered perspectives regarding supports, motivators, barriers, and recommendations for future program optimization from 25 parent/guardians who had a child enrolled in a Produce Rx program in Hawai‘i. The research findings suggest that the health center and pediatrician endorsement of the program as well as additional program design qualities made the program easy and convenient which inevitably supported program participation. Participants were particularly motivated by the positive effect that the program had both on the child and shared that the benefits were experienced by other family members, even though the program was really designed for just the participating child. This was similar to another pilot study which found that enhanced family bonding and positive experiences for children as a benefit of a Produce Rx program .Barriers to participation included scheduling time to attend the market to redeem the vouchers. Online prescription redemption with home delivery service was designed to address this barrier. However, this alternative did not appeal to many KPRx participants. Participants found the online market unappealing, citing the smaller variety of produce available online and the inability to hand pick the produce as reasons for not favoring this option. Contrary to our findings, previous research has found that delivery services enhanced participation in Produce Rx programs among low-income households in urban settings . In the Findings from this study suggest that several key program design qualities were beneficial to encouraging program participation. These included leveraging the trusted relationship between the health center, pediatrician, and participants, which is supported in the literature . The welMotivating factors were identified in this research, which can inform future recruitment and retention efforts. Parents and caregivers were motivated to support their child both in improving their health through diet and providing their child with the opportunity to try new FVs. This is key, as Native Hawaiian and Other Pacific Islander cultures place high value on family and collective good over individual benefits. While the KPRx program was designed to primarily benefit the child, parents/caregivers expressed the positive effect that the program had on the whole family. Future programs can leverage this motivating factor several ways; (1) expand definition of participant from child to family unit, (2) include outcome assessment and evaluation at the family or household level, and (3) consider expanding benefits to support the family/household unit.Participants experienced barriers related to scheduling to attend the farmers’ market, despite our program’s partnership with the local online food hub which offered participants the flexibility to select produce and have it delivered free of charge to their home. Several participants expressed the inability to hand pick produce on the online platform as a barrier to utilizing the option. The opportunity to choose and select foods has been cited as a best practice for increasing participant satisfaction and diet quality among other food assistance programs for individuals experiencing food insecurity  ,26,27. AThis novel study investigated motivators, barriers, and supports to participation in a pediatric Produce Rx program, by female parent/caregivers of children who were enrolled in the program. It is the first to do so in a primarily Native Hawaiian or Pacific Islander population. This qualitative study has addressed and met the 21 criteria of the Standards for Reporting Qualitative Research Guidelines . LimitatThis research has identified key themes related to the KPRx that can inform program optimization and testing. The program design led to well trained staff and vendors who then facilitated an engaging and convenient experience for program participants, ultimately supporting program participation. Despite having two venues to redeem vouchers, the online marketplace was not an adequate solution for some participants, which created a challenge for participants to schedule time to attend the market. The addition of a retail grocery store is a potential solution presented by participants to overcome this challenge and should be explored. Another strategy to be explored is the potential for an electronic system which could reduce challenges related to the paper vouchers. The KPRx program intends to ease financial barriers to accessing healthy food with the goal of improving the health of children. Interviewees reinforced the same motivation for participating. As such, this messaging can be leveraged to support program recruitment. These findings can ultimately lead to program improvements that will enhance program participation and subsequent impact on diet and health, an important next step to long term sustainability of Produce Rx programs.


N = 123) conceptualizations of wellbeing using a modified prototype analysis, which provided insights on people’s underlying structure of the construct as revealed through language. Chinese international students’ conceptualizations of wellbeing were prototypically structured; key components of wellbeing included positive relationships, security, positivity/optimism, physical health, and self-strength. The findings broaden the understanding of layperson wellbeing conceptualizations, provide insights into the wellbeing related concepts and language that are most used by international Chinese students, and inform strategies that tertiary education institutions might adopt to effectively support Chinese international students’ wellbeing.Wellbeing can mean different things to different people, even in the same culture with the same language. People living at the intersection of two languages and cultures, such as Chinese students studying in an English-speaking nation, not only speak a different language than their host country, but also may have different conceptualizations of wellbeing itself. This study investigated Chinese international students’ (aged 18–39,  Within academia, numerous ways of defining, measuring, and evaluating wellbeing have been developed . HoweverIn this study, we focus specifically on conceptualizations of subjective wellbeing. From the subjective perspective, most of the current wellbeing models draw upon one or more of four philosophical traditions , integrate hedonic and eudaimonic dimensions e.g., , incorpoDespite academic debates over wellbeing as a construct, only a limited number of studies have considered how laypeople understand and define wellbeing. Lay theory assumes that people establish a theory-consistent patterns of interactions, which impacts cognitive process phenomena, affects emotional arousal, and guides behaviors in line with their conceptualizations . Lay conA growing number of studies have directly examined lay wellbeing conceptualizations for specific populations. Studies find that conceptualizations are influenced by age , culturaAlthough the components identified in these studies align to some extent with existing theoretical wellbeing models, the theoretical models miss nuances that resonate with different populations. Misalignment between academic and lay conceptualizations of wellbeing can negatively impact intervention efforts, as interventions might miss the needs of the population of interest. Thus, further consideration of wellbeing conceptualizations for specific populations is needed.Here, we focus specifically on Chinese international students living in Australia. International students are critical to the economic, intellectual, and social culture of the host country e.g., . In AustStudent wellbeing is positively related to their capacity for academic achievement, ability to thrive in the tertiary environment, and later attitudinal and career outcomes . The queclassical view of concept structure is that all the category memberships or components within a concept are sufficient and necessary, thus sharing equal levels of importance  version of the survey, and for questions, they could respond in English, Chinese, or a mix of English and Chinese. Data were collected between September 2019 and February 2020.The survey first asked participants basic demographic information, including gender, age, education level and status, length of stay, and English proficiency level . English test scores were converted into International English Language Testing System (IELTS) scores based on the equivalent standard set by the university’s admission requirements and official score conversions see .The study intended to focus on a normal  population. To screen for potential psychological distress, participants were required to respond to the six-item Kessler Distress Scale . While t1This research was conducted in accordance with the University of Melbourne’s ethics review policies (protocol #1954456.1). The study utilized an anonymous survey and participants could withdraw at any time while completing the survey. At the end of the survey, a series of recourses were provided for references, such as a Mandarin/English speaking psychologist, the university’s counseling service, and external professional support like Lifeline Australia.To be included in the study, participants had to be a Chinese international student who was (1) studying at a tertiary education institution in Melbourne, Australia; (2) at least 18 years old; and (3) had lived in Melbourne for a minimum of 3 months and a maximum of 4 years. The living requirement aimed to ensure that participants were beyond the immediate transition period of living abroad and had significant experiences across both Australian and Chinese cultures.Following other wellbeing prototype analytic studies e.g., , we aimeThe study involved three steps. In Step 1, participants listed the components regarding wellbeing in a free-response format. In Step 2, participants rated the centrality (or importance) of the components mentioned in step 1. Step 3 explored differences in descriptions of high and low levels of wellbeing.Step 1 aimed to compile a list of wellbeing components. Participants were asked to list as many components and indicators of wellbeing as they could in an open-question format. Following the demographic information questions, participants were given the following instructions  down to which is least important (on the bottom). We would like you to think not only about your own experiences with wellbeing, but the concept of wellbeing in general – what you think are its defining components. Don’t worry about why you think something is or isn’t central.Step 3 aimed to identify whether there are differences between how participants conceptualize high and low levels of wellbeing, identifying the extent to which the people’s perceptions of wellbeing would be affected by the centrality of components. Following Step 2, participants were asked to write two narratives, first describing a person with a high level of wellbeing, and then describing a person with a low level of wellbeing. Participants were given the following instructions, with no time limit for their response:In this question, we would like to ask you to write two paragraphs, describing a person whom you think has a high wellbeing level and a person with low wellbeing level. You can write in English, Chinese, or the mix of both languages.Step 1 identified the wellbeing components mentioned by participants. As participants used English, Chinese, or a mix of languages, all Chinese words and phrases were first translated into English. The translation process was conducted with the assistance of a professional translator certified by the National Accreditation Authority for Translators and Interpreters (NAATI) Australia to minimize meaning distortion and subjective bias. Analyses were then conducted on the English data, following More specifically, monolexemic linguistic units which were easily recognizable were first identified and extracted. For instance, responses such as “peace,” “health,” and “autonomy” were coded as distinct linguistic units. Words that were preceded by modifiers or attributive words were coded by the representative word. For instance, “exercise regularly” was coded as “exercise,” “keep calm” was coded as “calm,” and “wild interests” was coded as “interests.”Phrases, identified based on sets of words that have a clear meaning, were coded as single represent linguistic units. For instance, the responses “work is secure” and “small things to enjoy in life, e.g., a nice dinner” were judged as phrases that convey single thoughts (rather than as separate words or capturing multiple thoughts) and were coded as the individual linguistic units “job security” and “enjoyment,” respectively. In contrast, we judged the response “eat and sleep well” as conveying two thoughts (eating well and sleeping well), which thus was divided into the distinctive linguistic units “eat” and “sleep.” Another example is “company with family and friends” were divided into “company with family” and “company with friends.” To maintain the richness of responses to the greatest extend possible, we were conservative in our codes . For example, “physical health,” “mental health,” and “health” were coded as three separate units. Through this coding process, a total of 750 responses were generated, comprising 327 unique linguistic units, with an average of 6.1 units per participant.Next, adapting analyses conducted by Finally, we grouped categories with similar meaning into representative components. For example, the categories “confidence,” “courage,” “curiosity,” “resilience,” “self-compassion,” and “self-knowledge” were grouped into the component “self-strength.” The categories “eat and food,” “exercise,” “fit,” “regular lifestyle,” and “sleep” were combined into the component “physically function well.”Step 2 examined the centrality of the wellbeing components identified in Step 1. In contrast to other prototype analyses of wellbeing components, which attempt to identify nomothetic aspects of wellbeing across a population, our analyses represent idiographic notions of centrality . Our analyses thus accommodated the fact that participants ranked their own components, rather than components identified by others. The following process was used to calculate a score for every component for every participant:1.Participants rank ordered their own responses, with the option of listing up to 10 linguistic units (which subsequently were converted into components in step 1). We converted ranks to points: points = 11 – rank.2.When a participant listed multiple components in the same item , that was treated as two separate components with equal rank.3.When a participant listed the same component twice or more, the higher rank was used.4.Components listed by a participant were re-ranked, with equal ranks assigned the mean value .5.A participant who listed 10 components would have assigned a total of 55 points (1 + 2 + … + 10 = 55). For each participant, the number of remaining points was calculated as 55 minus the number of points allocated. The remaining points were distributed evenly among all components not listed by that participant.6.For each component, we calculated the mean and standard deviation of the assigned points.Step 3 asked participants to describe a person high in wellbeing and a person low in wellbeing. Narratives were written in English and/or Chinese. To minimize possible distortions in meaning, data were analyzed in the given language, and then results were translated to English, assisted by a NAATI certified translator. The coding and categorizing procedures were similar to Step 1. First, the monolexemic linguistic units in the high level of wellbeing and low level of wellbeing narratives were identified and extracted separately. 392 linguistic units were identified for high wellbeing narratives, with an average of 4.36 linguistic units per participant, and 316 linguistic units were identified for low wellbeing narratives, with an average of 3.51 linguistic units per participant.As in Step 1, linguistic units were grouped into categories and then components, resulting in 26 components for the high wellbeing narratives and 19 components for the low wellbeing narratives. As in Step 1, coding was conducted by the first author, and then reviewed and finalized with the second and third authors. Finally, Cohen’s kappa was calculated to explore the extent to which high versus low wellbeing descriptions aligned with the conceptualizations of wellbeing identified in Step 1.The first step asked participants to freely list what they perceived as components of wellbeing. As summarized in Step 2 identified how central the identified components were for the individual respondents. As summarized in Step 3 further explored participants’ conceptualizations of wellbeing, based upon narratives describing high versus low wellbeing. As summarized in As summarized in We next examined the extent to which descriptions of high and low wellbeing from Step 3 aligned with participants’ conceptualizations of wellbeing identified in Step 1. As illustrated in Finally, we examined alignment between component centrality, as identified in Step 2, with the wellbeing descriptions in Step 3. For example, self-strength was ranked 12th in Step 2 but first in Step 3. The analysis thus considers importance of a wellbeing component, compared to how much a person with high wellbeing is influenced by that components. As illustrated in In recent years, student wellbeing has increasingly become an important topic for tertiary institutions, attracting academic and practical interest at both the individual and institutional level. In this study, we conducted a modified prototype analysis to explore conceptualizations of wellbeing for Chinese international students living in Australia. Through a three-step process, we explored individual and collective perceptions of wellbeing. The resulting prototypical structure of wellbeing included a number of components  with both central components  and peripheral components . The findings provide insights into lay conceptualizations of wellbeing, and potentially can be used to inform best practice approaches for promoting student wellbeing within tertiary educational institutions.In Step 1, 30 components of wellbeing were identified, which is comparable to other prototype studies of psychological constructs such as wellbeing , love anSimilar to a prior study investigating language about wellbeing used by Chinese international students, participants’ included positive relationships, security, physical health, health, and physically functioning well as part of their conceptualization of wellbeing . Other sInterestingly, both physical health and health were commonly mentioned, whereas other studies had less emphasis on the physical health aspects . FurtherThe Step 2 data demonstrated that some components were considered more central than others, which, according to In general, there was alignment between the frequencies that components were mentioned in Step 1, and the centrality of different concepts identified in Step 2. This aligns with other prototype analyses of wellbeing , suggestStep 3 pointed to the importance of considering wellbeing from a dual continuum perspective. In the conventional paradigms about wellbeing, the construct exists on a single continuum, and emphasis is placed on promoting positive ends of that continuum . AlternaNotably, our study modified other wellbeing-focused prototype analysis studies , in thatOur modified approach also allows for a more person-centered consideration of wellbeing conceptualizations. Different responses across participants, both in terms of the components identified and the centrality of those components, might indicate diverse cognitive processes , differeOur study provides some intriguing insights and points to several directions for future research, but also has a number of limitations. As a modified prototype analysis was utilized in this study, the findings could be a result of the method used, rather than a representation of replicable patterns. While a fairly sizeable sample was included, the results might be very specific to this sample. Replication is needed to consider the extent to which results might generalize to other similar samples. As the respondents were allowed to answer the survey in either English or Chinese, it is possible that the translation could be affected by the translator’s personal understanding and perception of the meaning of the Chinese words related to wellbeing. During the translation process, a NAATI register translator assisted to prevent meaning distortion. For the wellbeing words and phrases in Chinese, the data were translated into English first and then did the analysis. For the wellbeing narratives, the checked transcripts were analyzed first and then carefully translated into English. The technique of Double-Translation was also utilized in the translation process to ensure the linguistic equivalence of data in two language versions. The Chinese version of the data was translated into English, then translated back to, and compared with the original Chinese language to identify possible discrepancies. In this way, mistranslations or interpretation errors can be detected and minimized.This study focused on Chinese international students in the Australian context, which might not generalize to other countries’ context or international students from different cultural backgrounds. Future studies might expand to other populations and contexts to explore similarities and differences amongst international students from different cultures living within different host countries, which can provide guidance for tertiary education institutions in terms of helping international students to thrive. Furthermore, similar to the current study, future studies should examine the impact of the interactions between social contexts, cultural differences, and linguistic backgrounds upon the different lay conceptualizations of wellbeing. For example, refugees might be a population for future exploration. They are not only a minority group relocated to a new social context with different cultural or language backgrounds, but they also have unique experiences of wellbeing, which might lead to different conceptualizations of wellbeing.The centrality (importance) of the wellbeing components identified potentially might inform guidelines for higher educational institutions on resource allocation in order to offer more efficient and sufficient support for Chinese international students. For example, as participants indicated valuing physical health and security as more central to wellbeing than mental health, tertiary education institutions might pay more attention to providing service related to how to support students maintain a healthy, regular lifestyle, enhance campus security, and offer more work/internship opportunities to complement emphases on psychological counseling services. The components of self-strengths and self-characteristics and weakness mentioned in the high/low wellbeing narratives might point to cultural-based stigmas that align with moralizing dimension of lay understanding, which emphasizes individual responsibility . This miChinese international students are critical to the Australian economy and culture, and yet are at high risk of experiencing compromised wellbeing and suffering various mental health/illness issues, often not accessing supports that the university may offer. The lay conceptualizations and prototypical structures regarding wellbeing that students have, which are informed by their own cultural background, impact the possible mismatch of service provisions and support structures with students’ wellbeing needs that are less effective and useful as they aim to, especially when those structures misalign with the host culture. To support international students’ wellbeing, it is critical to understand their conceptualizations of wellbeing.Prototype analysis provides a method to uncover the underlying cognitive structures of wellbeing. Students’ conceptualizations were indeed prototypically organized, suggesting that structured approaches to supported wellbeing can be effective. However, the unique position of students living in a foreign culture and navigating multiple languages helps to broaden Western conceptualizations of wellbeing. The analyses revealed alternate prototypes, which can inform the understanding, assessment, and support of wellbeing across different populations. As a whole, the findings broaden understandings of wellbeing conceptualizations from a lay perspective, provide new data of international students through a wellbeing lens, offer a potential approach to further explore prototype-structured concepts, and provide insights into the nexus of micro and macro aspects that impact upon Chinese international students’ experience of wellbeing.The raw data supporting the conclusions of this article are available on request from the corresponding author.The studies involving human participants were reviewed and approved by The University of Melbourne’s Ethics Committee (protocol #1954456.1). The patients/participants provided their written informed consent to participate in this study.LH, MK, and LO: conceptualization. LH and MK: methodology. MK: validation. LH: formal analysis, writing—original draft preparation, and visualization. MK and LO: writing—review and editing and supervision. All authors have read and agreed to the published version of the manuscript.


Prior research examining sexual and intimacy concerns among metastatic breast cancer (MBC) patients and their intimate partners is limited. In this qualitative study, we explored MBC patients’ and partners’ experiences of sexual and intimacy-related changes and concerns, coping efforts, and information needs and intervention preferences, with a focus on identifying how the context of MBC shapes these experiences.N = 12; M age = 50.2; 92% White; 8% Black] and 6 interviews with intimate partners . Participants were recruited through the Fox Chase Cancer Center Tumor Registry and the Cancer Support Community. Qualitative data were analyzed using the Framework Method and Dedoose software.We conducted 3 focus groups with partnered patients with MBC [Qualitative analyses revealed several key themes reflecting ways in which MBC shapes experiences of sex/intimacy: (1) the heavy disease/treatment burden leads to significant, long-term sexual concerns  and consequent heightened emotional distress for both patients  and partners ; (2) viewing the relationship as having “an expiration date”  influences patients’ and partners’ concerns related to sex/intimacy and complicates coping efforts; and (3) information needs extend beyond managing sexual side effects to include emotional aspects of intimacy and the added strain of the life-limiting nature of the disease on the relationship. The heightened severity of sexual concerns faced by patients with MBC, compounded by the terminal nature of the disease, may place patients and partners at risk for significant adverse emotional and interpersonal consequences.Findings suggest unique ways in which sex and intimate relationships change after a diagnosis of metastatic breast cancer from both patients’ and partners’ perspectives. Consideration of the substantial physical and emotional burden of MBC and the broader context of the relationship and intimacy overall is important when developing a sexuality-focused intervention in this population. Addressing sexual concerns is a critical part of cancer care with important implications for patients’ health and quality of life. With treatments continually improving for metastatic breast cancer (MBC), nearly one-third of women with this diagnosis can expect 5-year survival . In lighSexual concerns are reported by 50 to 80% of patients with a diagnosis of MBC . Common In light of the lifespan limitations associated with having a terminal disease and the heightened physical and emotional symptom burden associated with metastatic disease and its treatments , and priper se, and aim for inclusivity and breadth in our investigation. For our purposes, we define intimacy as an interpersonal process involving mutual sharing and understanding and feelings of closeness, warmth, and affection, with both physical and emotional aspects  What are the sexual and intimacy-related changes  and concerns for patients with MBC and partners of patients with MBC?; (2) What are patients’ and partners’ experiences of coping with these concerns?; and (3) What are patients and partners’ information needs and intervention preferences? For all three questions, we were particularly interested in understanding how the context of metastatic disease may have shaped patients’ and partners’ experiences. We include both the terms “sexual” and “intimacy” in our aims and methods because we recognize that patients’ experiences of physical intimacy may or may not include sexual activity,  aspects .The study protocol and procedures were reviewed and approved by the Institutional Review Board at Fox Chase Cancer Center . The consolidated criteria for reporting qualitative research (COREQ) checklist was followed in reporting the methods and findings of this study . ParticiIn an attempt to diversify our sample, we recruited through both convenience methods  and community-based stakeholder engagement methods  in partnership with the Cancer Support Community, a national non-profit advocacy organization, and Cancer Support Community of Greater Philadelphia. A trained research assistant conducted eligibility screening privately over the phone with patients who were interested in participating. Interested patients were asked for permission to contact their partners about participation and for their contact information. Partners for whom this information was provided were then contacted and screened privately over the phone. If a potential participant screened as eligible, the research assistant discussed the study details and confidentiality and provided the opportunity for the potential participant to ask any questions and to enroll if interested. Participants who agreed to enroll then provided written consent and filled out an availability form to help facilitate scheduling. Participants received $40 in gift cards for their participation. Participants had no personal knowledge of the interviewers  or members of the research team prior to or during data collection that could potentially bias data.N = 12) participated in one of three 90-min focus groups. Focus groups were selected because the shared nature of the conversations can often elicit deep discussion of issues, even for sensitive topics like sexuality; we have used this format in other qualitative studies on a similar topic in breast cancer  once it was determined that scheduling and recruitment challenges would render the focus group format unfeasible for study partners. All other aspects of the qualitative interviewing process were similar across the focus group and individual interview formats; no repeat interviews were carried out; All focus groups and interviews were conducted virtually using password protected Zoom meetings and led by female licensed psychologists who had at least severe years of clinical and research experience conducting qualitative research in cancer settings . Privacy of participants was ascertained at the start of every focus group/interview. All participants reported being in private settings at home, with no non-participants present. The PI (JBR) led all patient focus groups, with a co-author (LZ) acting as note-taker; either JBR or LZ led the partner interviews using the same standardized, structured interview guide, described in the next paragraph.Data were collected in February–April 2021. All patient participants , reviewing the study purpose, and clarifying any participant questions. To facilitate rapport and transition the participants into a discussion of potentially more sensitive sexual concerns, the qualitative guide opened with a general relationship question, and from there, questions were broken into two main parts: (1) Sexual and Intimacy-Related Changes and Coping Efforts, and (2) Information Needs and Intervention Preferences. To encourage open communication of potentially sensitive topics, patients and partners were interviewed separately. Demographic data  were obtained through online self-report questionnaires at the time of consent. Clinical data  were obtained through coding transcripts and corroborated with patients’ charts when possible.All focus group and interview discussions were audio-recorded and transcribed verbatim using the Zoom audio transcription feature. This feature functioned by automatically transcribing verbatim the audio of each recorded meeting and providing a text file that was divided into timestamped sections for each portion of recorded audio. These text files were then downloaded to a secure server and de-identified for any identifying information by one of the interviewers (LZ). The de-identified verbatim transcription was then checked and edited for accuracy by a research assistant through cross-referencing with the original audio recording and field notes taken during the interviews. Any sections of audio or transcribed text that were unclear were double-checked and clarified by one of the interviewers . Participants were not provided a copy of the interview transcripts.Data were then analyzed following the steps outlined in the framework method , 2014, wOne of the lead coders (JBR) has substantial experience in conducting qualitative analysis using the framework method , 2017 asData from patients and partners were analyzed separately by four coders , and proceeded in several steps. First, two lead coders , constructed a coding book with definitions based on the research questions, the interview guide, and a close read of the first patient transcript, as described in the framework method. Because the same interview guide was used for both patients and partners, capturing their unique perspectives on the same issues, the codes were also the same with a few exceptions  The information gained directly from patients about this topic was more detailed and thus necessitated coding using more codes related to different areas of need. Second, once the codebook was finalized, two independent, trained coders  autonomously applied codes to the transcripts. Coders engaged in frequent discussion and reflection to discuss any emergent differences in coding application with the PI and, when needed, the qualitative expert (JG) until consensus was reached . FinallyTwenty-one patients screened as eligible and were approached for participation; of these, 16 consented to the study (76%). Four patients who completed consent did not end up participating in the focus groups . The total patient sample therefore included 12 women, 8 of whom were recruited through FCCC, with the remainder recruited through the community-based recruitment methods. Patient characteristics are provided in n = 4), privacy/topic is sensitive or embarrassing (n = 3), or scheduling issues (n = 2). Partner characteristics are provided in Six partners participated in study interviews; 1 consented but was lost to follow-up when attempting to schedule for the interview and 9 partners who the recruiter attempted to recruit opted out. In 5 cases, this occurred when the patient indicated that the partner would not be interested and so no further attempts were made to enroll the partner, and in 4 cases, this occurred when the patient indicated that she had spoken to the partner and the partner refused. Reasons for partner refusal included not being interested  Patients’ Experiences of and Reactions to Sexual and Intimacy Changes and Concerns; (2) Partners’ Experiences and Roles; (3) Context of a Life-Limiting Illness; (4) Coping with MBC-Related Sexual Concerns; and (5) Information Needs and Intervention Preferences. Main themes, theme descriptions, corresponding subthemes, and illustrative quotes are shown in Within this theme, patients described a range of sexual concerns , and they noted how the cumulative treatments they had received due to their advanced disease seemed to amplify the severity and complexity of their sexual problems and/or complicate their responsiveness to or ability to benefit from common treatment strategies. For instance, one woman described how, because she was “neutropenic all the time,” when she would engage in sexual intercourse with her husband, she would experience infections, saying, “you are in the hospital with sepsis. I’m way beyond, like, dilators and lubricants” . The same patient spoke about how the extensive nature of her surgeries and treatments contributed to changes in her view of herself as a woman, saying, “Sometimes I’ll say something like, well … you know … chemo-induced menopause and I had surgery, then, you know, ovaries out, double mastectomy. I said—at 45, I was saying, ‘well I’m one operation away from being a man’” . Another patient reported that “because of it being breast cancer, I could not take any hormones or estrogen or anything, so it threw me in a full-blown menopause with no help from anything and the situation went from bad to worse. You know, even now it’s [intercourse is] painful” . Loss of desire was also a significant problem, with one patient commenting on a total loss of desire for sex, saying, “For me, I’m just not like interested in, like, intimacy at all. I do not have like any urges or desire, like I could just be fine without it” . Partners also commented on patients’ sexual concerns, including on the impact it had on the intimacy in their relationship. For example, one partner commented, “we have never been like a holding hand kind of couple … but, like, I feel like maybe I’d say we like would cuddle less because that usually like that comes before after or both, so I feel like there’s less there’s definitely less physical contact between us than before” .The severity of the sexual problems experienced by many of the patients tended to be linked to substantial emotional reactions. For instance, the decreased ability to engage in sexual intimacy with their partners led to feelings of pressure and guilt, which served further to exacerbate patients’ distress about the sexual difficulties. Patients spoke of how their desire to be “a good partner” could bring with it pressure to engage in sexual activity and then guilt when the sexual experience does not go as planned  as well as different levels of awareness of the patients’ sexual problems. Partners described their personal experiences with these sexual changes, their emotional responses, and the perceived impact of sexual changes on outcomes for the patient and the relationship. For instance, one partner commented on how his wife’s decreased sex drive had impacted his own, saying, “I feel like I do not have as much of, maybe, as a sex drive, as I used to either … it used to be like we’d go through, like those ruts and it’d be like we’d both be going like ‘We got to do that more often’ [laughter] you know … whereas it’s like now it happens and … I do not think it’s like ‘oh wow, got to do that again like tomorrow.’ It’s just less of a drive there … if that makes sense” . One patient commented on how the changes in their intimate relationship had impacted her husband’s sexual function, saying, “he has his own physical issues because of the psychological pressures, you know, that he puts on himself” . Occasionally, patients and partners commented on different levels of awareness partners had of the patients’ sexual changes, with one patient pointing out her husband’s lack of awareness of changes in her vaginal lubrication during sex  and others commenting on more approach-oriented reactions that tended to be more successful . For instance, as shown in This subtheme describes how the experience of living with a life-limiting disease shaped the experience of sexual and intimacy changes, and responses to these changes. First, patients tended to speak openly about how having metastatic disease reshaped how they viewed their relationship in general—which could serve as a backdrop for sex and intimacy—and their expectations for the relationship in the context of the life-limiting nature of their diagnosis. For instance, one woman described this sentiment by saying, “… you should not, I guess, view your relationship as having an expiration date” . Other patients concurred, including one woman who spoke about having to adjust to the idea that she may not live long enough to retire with her husband . When asked about what should be included in an educational program addressing intimacy, the same patient who described her relationship as having an expiration date stated, “I mean a program, in that respect, I think, has to go even deeper than just sexual relations because there’s so many other psychological aspects to it that layer onto your ability to have that sexual relationship” . However, while some patients described stress on the relationship  intimacy with a sense of openness, flexibility, and acceptance (without resignation). This often involved shifting toward a more inclusive definition of intimacy and toward non-intercourse sexual activity. For example, one patient shared, “My husband is awesome [chuckle] … he really tries. He brings home new toys and different things—like, anything that you can think about to help me. He's like, you know, ‘I do not want it to be one sided. I do not want to just be enjoying it by myself. I want you to enjoy yourself also. So whatever I can do, you know. Let us see if this works or how about we talk to your doctor about this’ …” . This open attitude and collaboration between patient and partner was viewed as critical by this couple for finding effective approaches. Another patient acknowledged the importance of “removing that psychological pressure so that you can kind of regain maybe that emotional intimacy between one another, where you can then start building those blocks toward, you know, the sexual relationship again” , illustrating the importance of addressing the emotional piece in order to regain physical intimacy. Another patient talked about how her physical intimacy had shifted from intercourse to other activities, saying, “And we do communicate and we do, you know—for me—I hate to say this, but, like, he rubs my head and to me that feels as good anything [laughter]. So, you know, there are ways of being close without the intercourse, you know, without the goal” .While some participants spoke of finding effective strategies for coping, others cited strategies that proved ineffective in that they left them without physical intimacy in their relationships. For instance, one patient, described earlier as having a religious faith proscribing sexual activity within marriage, noted, “I feel bad, like, it's not his fault that I cannot do this..so I do offer, you know, oral sex or something like that, but it's not also a preference …” . Another patient described tolerating painful sex because the effort required to find sexual aids was “trying and taxing” . Additionally, one partner who described a resilient attitude toward sexual problems explained how he used communication to diffuse the effect of sexual problems within the relationship, saying, “I tell her all the time, I say ‘if this happens, it happens … if it does not, do not think that that's the defining moment of our relationship’” . For others, communication was strained and included significant avoidance and discomfort regarding discussing sex and intimacy. For instance, one partner commented on the role of communication in avoidance of sexual activity, saying, “Yeah, like, I did not feel like, ‘hey, now’s the time, let us go, and she did not say, ‘I need it – give it to me,’ so it just did not happen . Avoiding talking about the sexual relationship sometimes went along with the ineffective coping strategies described previously. For instance, one patient stated, “we do not talk about, like, it hurting ever, you know what I mean? I’ve explained it to him that it hurts, but now I just endure it, so um, yeah … That’s a choice of me, like, not deciding to tell him about it …” .Patients and partners reported informational needs for a range of issues and coping strategies, including emotional aspects of intimacy and the relationship, effects of their treatments on their sexual function and intimacy, and strategies to cope with distress related to sexual problems. For instance, one partner wished he had received “basics of ‘here’s some things when you are on hormonal therapy that may be helpful during intimacy’” . Another partner who had lamented a loss of sex drive for his wife and himself stated that he would like “information on how she could get that drive back … and if there’s something I can do to help with that process …” . When asked what he most hoped to gain from an educational program, he explained, “a way for us to be more intimate and, I guess, for us and for her to want to be intimate, you know, like … to get that kind of connection back that we had … we still love each other, and we still like being around each other, so … I think it's more about, like, maybe getting back to that sex drive that's missing that way” .In addition to information about physical sexual side effects, some patients and partners discussed the importance of an intervention that could address emotional concerns pertaining to the sexual changes and more broadly, related to the relationship . Alternatively, some patients and partners described having already coped satisfactorily with sexual changes, such that an intervention would not be beneficial, as with one partner who stated, “I feel like we are pretty comfortable with where we are at with everything. I do not—I do not know, I mean, it sounds good …” . By contrast, others felt that their sexual concerns were so intractable as to be beyond hope. The chronicity of these issues seemed to play a role in these perceptions and lack of expectations for usefulness of interventions. For example, one patient said she would consider participating in a sexuality-focused intervention “to help someone else more than myself, because I almost feel like I’m a lost cause it’s—it’s I almost feel like it’s no hope at this point for me and it’s just I’m—I’m in this situation, or predicament and I just have to deal with the cards that have been dealt me” . Similarly, one partner stated, “So, I mean, I’ve been doing this for six years and she’s been keeping on top of it … for someone new, that [educational program] might be just the thing … we also have worked on our own selves … We’ve been continuing to grow through this so I do not know whether we need it anymore, but I’ll participate in whatever you present” .Overall, results of this qualitative investigation in patients with metastatic breast cancer (MBC) shed light on unique aspects of the experience of sexual concerns in this population, while also contributing to our understanding of both patients’ and partners’ perspectives on a changed view of the relationship itself in the context of a life-limiting diagnosis. In general, the types of issues patients and partners described were similar in nature to what has been reported in the literature for women with non-metastatic breast cancer e.g., . HoweverThis study provided novel findings on MBC partners’ perspectives of cancer-related sexual changes and concerns, with the role of partners being especially notable in discussions of coping with the sexual concerns. For example, partners’ involvement helped to determine the directions and effectiveness of strategies patients described in coping with sexual concerns, including whether to approach or avoid the sexual issues in the relationship. For instance, partners’ openness to find solutions for vaginal symptoms that were interfering with sex seemed to help allay patients’ negative feelings associated with their sexual concerns while also leading to creative solutions. By contrast, partners who seemed to cope by avoiding discussing the topic or by withdrawing from physical intimacy inadvertently perpetuated a lack of intimacy and feelings of disconnection between the couple. In sum, these findings are consistent with those of prior studies demonstrating the important role of the partner in BC-related sexual concerns .With these findings in mind, a couple-based intervention approach seems well suited to addressing sexual concerns because it addresses partners’ coping and the interpersonal context of such concerns. Indeed, prior studies provide convincing evidence for couple-based interventions in addressing women’s sexual concerns after cancer . HoweverNovel findings from this study include ways that the life-threatening nature of MBC seemed to shape patients’ and partners’ perspectives on the relationship. Most strikingly, some patients openly described their relationship in terms that indicated an endpoint . In the same vein, some patients acknowledged competing needs for confronting the reality of the diagnosis with still maintaining normalcy in the relationship. These ideas echo those found in prior research that suggest that the stress of the life-limiting diagnosis itself can influence women’s intimate relationships and sexuality through stress and emotional distress , above aA major implication of these findings is the importance of addressing the broader context of survivors’ and partners’ emotional and interpersonal needs during discussions of sexual concerns related to the cancer. Researchers aiming to design an intervention addressing sexual concerns in this population could consider building off prior interventions that have aimed to help women and partners cope with the diagnosis of advanced breast cancer e.g., . SpecifiIn addition to implications for intervention development, this study has several important clinical implications. First, when inquiring about sexual concerns, clinicians may benefit from awareness of the severity of the common sexual concerns in the context of the heavy disease and treatment burden. Having appropriate referrals is important when treating patients who are experiencing severe or intractable sexual problems, or significant emotional concerns or relationship distress alongside sexual concerns. In addition, educating clinicians to broach the topic of sexual health could normalize the conversation in clinical settings, decrease perceived stigma associated with discussing sexual issues, and hopefully facilitate productive dialogue between clinicians and their patients in the future . Second,There are several important limitations to this research study to acknowledge. First, although we made efforts to recruit using both site-based and community-based methods in the hopes of recruiting a more diverse sample, the sample was ultimately limited in its racial and ethnic diversity as well as sexual orientation and gender identity. Some research suggests that the types of sexual concerns and information needs that breast cancer patients report tend to be similar across racial and ethnic backgrounds , althougFindings from the present investigation contribute to our understanding of challenges to sex and intimate relationships for patients living with MBC. An important finding is that the often-heightened severity of sexual concerns for patients with MBC, compounded by the terminal nature of the disease, may place patients and partners at risk for potentially significant adverse emotional and interpersonal consequences. Results suggest that when developing interventions, researchers should consider acknowledging and potentially addressing the range of emotional responses to sexual concerns, helping patients and partners navigate changes in their intimate relationships, and equipping both patients and partners with skills for coping with these changes amidst the considerable physical and emotional burden of MBC. Addressing unmet sexual health and intimacy needs is a fundamental part of whole-person cancer care that has important implications for the wellbeing and quality of life of patients with MBC and of their partners.jennifer.reese@fccc.edu.The datasets presented in this article are not readily available because of the sensitive nature of the qualitative data in order protect patient confidentiality. Requests to access the datasets should be directed to The studies involving human participants were reviewed and approved by Fox Chase Cancer Center Institutional Review Board. The participants provided their written informed consent to participate in this study.JR, LZ, AZ, LP, MD, and JG contributed to conception and design of the study. JR, LZ, SM, KS, LP, AZ, and BC contributed to resources acquisition and data collection. JR, LZ, SM, KS, and JG conducted analyses. JR wrote the first draft of the manuscript. LZ contributed significantly to a revised next draft. All authors contributed to the article and approved the submitted version.This study was funded in part by 134607-RSG-029-01-CPPB from the American Cancer Society to JR, PhD and P30 CA006927 funded by the National Cancer Institute of the National Institutes of Health. The funding agencies had no role in the conduct of this study.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Patient-reported outcome measures (PROMs) or patient-reported outcomes (PROs) are used by clinicians in everyday clinical practice to assess patients’ perceptions of their own health and the healthcare they receive. By providing insight into how illness and interventions impact on patients’ lives, they can help to bridge the gap between clinicians’ expectations and what matters most to the patient. Given increasing focus on patient-centred care, the objective of this meta-synthesis was to summarise the qualitative evidence regarding patients’ perspectives and experiences of the use of PROMs in clinical care.A systematic search of the following databases was undertaken in August 2020: Medline, EMBASE, EMCARE, PsychINFO, Scopus and the Cochrane Library. This review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Methodological quality of the included studies was assessed using the Critical Appraisal Skills Programme checklist for qualitative research (CASP). A meta-ethnographic approach was used for data extraction and meta-synthesis of findings (PROSPERO registration: CRD42020202506).Fourteen studies from a range of countries with differing qualitative research methodologies were identified. Three themes were identified, namely ‘patient preferences regarding PROMs’, ‘patient perceived benefits’ and ‘barriers to patient engagement with PROMs’. The perspectives of patients suggested they preferred PROMs that were simple and relevant to their conditions and found benefits in the way they facilitated self-reflection and effective communication with their clinicians. Patients, however, questioned the relevance of some individual questions and purpose.PROMs can be a useful tool in the clinical setting by enabling individualisation and patient centred care. This meta-synthesis provides insights into what patients find beneficial as well as barriers to their engagement, highlighting the importance of educating patients about PROMs. In response to growing recognition of the importance of patient-centred care, the last 30 years have seen a proliferation in the number of tools designed to assess patients’ perceptions of their own health and the healthcare they receive. A patient-reported outcome (PRO) is “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else .” PatienThe various applications of PRO data include enhancing clinical interactions and decision-making at the individual level; demonstrating the risks, benefits, and safety of interventions as well as variations in outcomes, costs, and processes at a service level; and highlighting trends and disparities at a population level . AlthougDrawing definitive conclusions about the impact of using individual-level PRO data in clinical practice has been difficult due to the heterogeneity of interventions, outcomes, and indicators . SystemaAt the same time, numerous barriers to the effective use of PROMs in practice have been identified . RegardiQualitative research is vital for understanding the mechanisms and contextual factors that determine whether interventions are effective in practice and developing theoretical models to guide successful implementation . Two revThe protocol for this systematic review was registered with the international prospective register of systematic reviews–PROSPERO (Registration # CRD42020202506).This review included qualitative research that explored experiences and perspectives of patients regarding PROMs use in healthcare, and which used thick descriptions to describe these findings. The use of thick descriptions meant authors of the qualitative research were able to provide detailed and direct quotes about the findings rather than mere descriptive summaries, or mere quantification of qualitative data. Research, which was focused on clinicians’ experiences of PROMs solely, and was not exclusively underpinned by qualitative research methodologies/methods were also excluded. All adult  patient populations  were of interest. The review was limited to studies published in English.th and 28th August 2020 with English language limit, but no restrictions placed on date of publication. To minimise publication bias, targeted keyword searches of grey literature sources  were conducted, in conjunction with hand searching of the reference lists of included studies (pearling) (LC & PL). The search combined MeSH terms and key descriptors of 1) patients, 2) experiences and perspectives, 3) PROMs, and 4) qualitative research. The search terms and parameters are provided in ™ where the hits from databases and grey literature were merged. These results were then transferred into Covidence™ (Covidence.org), which is a data management software used for systematic reviews. Following removal of duplicates, two independent reviewers (LC & PL) screened first by title and abstract, followed by full text screening. Any disagreements were resolved through discussion between the reviewers.An initial search was conducted in MEDLINE (PubMed), and then translated for and undertaken across all other included databases: Embase, Emcare, PsychINFO, Scopus, and the Cochrane Library (LC & PL). The databases were searched between 10The methodological quality of the included studies was assessed using the Critical Appraisal Skills Programme checklist for qualitative research (CASP) , which iA meta-ethnographic approach  was usedTo enhance rigour and minimise biases, the entire process was overseen and reviewed by another member of the review team (SK).™. The title and abstract screen identified 39 potentially relevant studies for full text review. Of these, 25 studies were excluded for reasons documented in The literature search yielded a total of 9261 articles, including 9258 records from database searches and a further three studies were identified through pearling. After the removal of duplicates, the titles and abstracts of 5706 articles were screened against the inclusion criteria in CovidenceFour of the studies originated in the United States of America , 28–30, The majority of the studies involved purposive sampling of adult male and female outpatients living with a chronic condition , with sample sizes ranging from 9 to 32 individuals. One study included patients with acute musculoskeletal presentations . Two stuAll of the studies collected participant experiences and perspectives of PROMs  use. The PROMs either had been used in the past and/or were currently in use, or had been implemented as part of the study, with the exception of two studies , 28 thatAll of the studies were evaluated as having a clear statement of the aims of the research, an appropriate qualitative methodology, data collection that addressed the research question(s), sufficiently rigorous data analysis, and a clear statement of findings. Two studies , 25 did The meta-synthesis of 14 studies resulted in the identification of three overarching themes: patient preferences regarding PROMs, patient-perceived benefits of PROMs, and barriers to patient engagement with PROMs.The patient preferences regarding PROMs identified cover a range of topics including type and nature of questions, formatting, medium (electronic versus hardcopy), environment (clinic versus home), timing, and other applications.Three studies found that patients preferred PROMs with relevant questions , 27, 29 Yes, the patient reported outcome measures (PROMs) are applicable to my health problem, and therefore, it’s relevant to answer such questions.”“Some patients suggested PROM questions need to be more nuanced if they are to accurately capture the nature of their fluctuating symptoms , 30, 33,The disadvantage of such questionnaires is that they measure a specific moment in time. That is difficult since my health problems differ each day. Every once in a while when I fill in the questionnaire on a relatively good day I wonder if my physiotherapist gets a representative picture.”“In addition, patients favoured PROMs formatted with fewer questions, consistent instructions, and simple, intuitive graphics , 34, 36.I think there are so many questions and different instructions. Sometimes I am told to mark with a circle [around the response categories], and sometimes I am told to mark with a cross. […]”“because paper has a way of getting lost” ”“I come in every year anyway”  And that makes you aware of symptoms that you must be attentive to.”“Mejdahl et al.,  reportedI actually think that just filling in the questionnaire and just by ticking those boxes made me more conscious, and then I said to myself “okay now I need to take on responsibility, because it is my life.”“it kind of jogs your memory”  talk about the questions and what did I answer last time… or sometimes this reminds me something that I should ask the nurse.”“being taken more seriously”  (It) should be mandatory. That way the doctors get a feel of how you are feeling or how you think you are feeling.”“PROMs facilitated clinician planning, assessment, diagnosis, treatment and monitoring , 35, 37,Obviously the benefit of using PROMs is that PTs can prepare themselves for my visit. Using the PROM results, your PT  can analyze what might trigger the health problem and think about the intervention they might use. At a later phase, when the PROMs are completed again, they could analyze the progression did the pain decrease or is it completely resolved?““[…] You can of course certainly end up with more accurate treatment by filling in this kind of questionnaire.”“These questions take out the fluff and other things that the doctors talk about and focuses them on the issue. I think it helps the doctor”“Patients reported PROMs improved patient-clinician communication by providing an “icebreaker” , structuWell, I think it is very nice. The questions are much more everyday questions. That makes it much easier to explain and describe how your epilepsy actually is. Because you try and you try to explain how it is and how it feels to your close ones and to the doctors, but it is so hard to explain in a way that normal people can imagine how your body experiences it.”“It was extraordinarily helpful when you sit down with your doctor and he says, “This is what I see…” and I say, “Well this is what I see…”. And we talk about how we can improve those areas that I would like to see improved, or maybe manage better those areas that may not be able to be improved”“Patients living with depression and/or anxiety appreciated that PROMs enabled them to communicate difficult information impersonally , 31, 35.[…] Sometimes I don’t want to tell people how I’m feeling. You know, pride or don’t want to bring somebody else down. So this way it’s a more impersonal way of answering the questions because you’re just marking on paper; you’re not actually telling somebody face-to-face.”“You’re more likely to lie, well I found I’m more likely to lie… Because I still find a lot of stigma attached to depression”“The barriers to patient engagement with PROMs identified cover a range of topics including patients’ capacity to answer, question relevance and validity, patients’ understanding of purpose and inconsistent clinical utilisation.Some patients questioned whether or not they were qualified to answer PROMs –34.Well, we are not supposed to be doctors, we are not supposed to assess our own health, because there are some people who are professionally educated to do that”“Alternately, some patients questioned the relevance of individual PROM questions , 34 and/[…] I think the questions are silly. Take me for an example; my spine is collapsed, and I have pain in my shoulders and hip. Then you ask if I have pain. I answer yes. Nevertheless, this has nothing to do with my leukemia. […]”“You fill out a questionnaire that says what’s your level of pain. You write that down but you don’t know that person’s level of pain… You could say to me, yes I’m in pain, but I don’t know your pain… Do they really know?”“Why would it help me to know that my situation has greatly worsened?”“if you knew the purpose (…) one would take it a bit more seriously” ”“Alternately, some patients reported that the purpose of PROMs was limited to clinician- and/or research-related applications rather than anything patient-specific –34.Well, they can’t use my part in itself. I think it is more in general that they use it. To see if people who take these medicines and who have epilepsy, to see if they have a direction, I think. So, I don’t think, that they use exactly my questionnaire, except as one in many.”“Actually, I’ve always believed that it was something that was saved in some big database or other somewhere and that there were researchers who sat and looked at it. I had actually never understood completely that it was something that one could use in the consultation”“Some patients reported that PROMs were used inconsistently during consultations , 33, 36.Well… (long break). I don’t really know. I don’t think he (the doctor) has talked about it (long break). Yes, maybe once when the doctor said it looked really nice but otherwise there was nothing.”“In order to get them (patients) to understand the value of it, of filling out the information, the doctor needs to use it… I mean why am I gonna fill it out if they’re not gonna look at it? […]”“This systematic review examined the findings of qualitative studies with thick descriptions exploring patients’ experiences and perspectives of PROMs in healthcare. The meta-synthesis identified three overarching themes: patient preferences for PROMs, perceived benefits of PROMs, and perceived barriers to the use of PROMs. Regarding preferences for PROMs, relevance of content and specificity to the disease or condition were considered important, as was presentation in a simple and consistent format. However, there was variability in preferences for how, where, and how often PROMs should be administered. Patients’ perceived benefits of PROMs related to gaining a sense of empowerment through self-reflection and providing information to assist with clinical planning, assessment, diagnosis, individualised treatment, decision-making, and monitoring. Barriers to engagement with PROMs reported by patients included patients’ capacity to provide credible information, perceived relevance and utility of the questions, understanding of purpose, and concerns about how information gathered is applied clinically.The value patients placed on the relevance and specificity of PROMs in the included studies is consistent with findings from other evidence syntheses. A scoping review  found thThe variability evident in patients’ preferences for paper-based and online PROMs completion is consistent with findings from the realist synthesis of PROMs by Greenhalgh et al., , which fA commonly perceived benefit of PROMs reported in many of the included studies was improved patient-clinician communication e.g. –33, 35),, 35,33, Patients’ capacity to complete PROMs has been previously identified as a barrier to the use of PROMs in cancer care . HoweverA strength of this review was the inclusion of mixed-methods studies with qualitative content in addition to qualitative studies, which enabled examination of findings from study designs often employed in research on the development and piloting of PROMs that may be excluded from other qualitative syntheses. The included studies were based in a range of countries and healthcare contexts and presented the views of various patient groups involved in the use of PROMs. In many cases, studies included well-established patient measures, but also included views about PROMs as a general concept.While the review methods followed best practice guidance in the conduct of meta-analyses (PRISMA), there are several potentially limiting factors. Language and publication bias are likely present given that the review included only studies published in English. However, there were seven studies included from non-English speaking countries, suggesting the impacts of language bias were minimised. To reduce publication bias, searches of grey literature and reference list pearling were conducted but these did not identify any sources for inclusion. Although the search strategy was comprehensive, it was not an exhaustive search of all databases and all potential sources of grey literature, thus it is possible that relevant studies may have been missed (e.g. particular focus on patient perspectives of PROMs and excluding clinician perspectives). Limitations were also present in the included evidence base. As identified through critical appraisal, some studies did not provide a clear description of the research methodology, and in some the role of the researcher was potentially unclear, resulting in trustworthiness issues.This meta-synthesis summarises qualitative evidence about the experiences and perspectives of patients regarding the use of PROMs in healthcare. The variability in preferences expressed by patients suggests that a one-size-fits-all approach to implementing PROMs may not be adequate, which is further supported by the value patients placed on the relevance and specificity of PROM content. To optimise the relevance of PROMs, careful consideration of the patient, context, and instrument may be required. The findings also highlight the importance of having a clear purpose for collecting PRO data and understanding of how data will be applied clinically and communicating this information to patients. The benefits of PROMs perceived by patients in the included studies aligned with literature indicating that PROMs can facilitate communication, individualisation of care, identification of concerns, and shared decision making. The evidence base identified in this review highlights the need for more in-depth inquiry into the perceived value and benefits of PROMs , preferences for their delivery, and barriers to their use from the perspective of patients.S1 Table(DOC)Click here for additional data file.S1 Fig(TIF)Click here for additional data file.