Apathy is widely accepted to be a multidimensional syndrome. Assessment scales typically probe one or more dimensions but there is no consensus on the precise nature of these domains. Existing major theoretical frameworks include cognitive, behavioural, and emotional dimensions of apathy. While a social domain has also been suggested, it is far less well studied. Here we argue that although most assessment scales have been developed with these theoretical frameworks in mind, few findings actually support the existence of some of the dimensions that have been proposed, with the evidence for separation of cognitive and behavioural dimensions particularly lacking. In our opinion, although there is evidence for behavioural and emotional domains of apathy, the contention that there might be a separate dimension of cognitive or executive apathy is far less robust. Further, while there is some evidence for a social dimension of apathy, this has not been investigated sufficiently to make any definitive conclusion. We argue that there is a pressing need to reconsider different domains of apathy using robust analyses of proposed theoretical dimensions. Prevale1.1multidimensional syndrome, but the precise details of these dimensions vary according to different theoretical positions. One highly influential conceptual framework has operationalised apathy as a “loss of motivation unattributable to emotional distress, cognitive impairment, or diminished consciousness” (behaviour), diminished goals (cognition), and diminished emotional responses to success or failure (emotion). The distinction of apathy from similar conditions, such as depression or anhedonia, is also made clear.Most researchers appear to agree that apathy is a ousness” . In this“auto-activation” deficits that subsumes both of them. Another notable difference is the replacement of cognitive apathy with deficits in executive function that Marin had excluded as a cause of apathy. Some investigators have also proposed the existence of a social domain , with 18-items distributed evenly across three domains . In this1.2The original division of apathy into cognitive, behavioural, and emotional subtypes was based on observations of patients with neurological conditions . SimilarHere we critically examine the literature on theoretical frameworks for different domains of apathy. Most of the empirical data that have been used to support claims for separate dimensions come from studies which report results from the use of apathy scales. We assess whether these actually reveal the dimensions they are supposed to dissociate when the data have been scrutinised by rigorous factor/structural analysis. We conclude that although there is evidence for behavioural and emotional blunting domains of apathy, the contention that there might be a separate domain of cognitive or executive apathy is less robust on the basis of the extant literature. Further, while there is some evidence for a social dimension of apathy, this domain has not been investigated sufficiently in previous work to make any definitive conclusion. For the interested reader, detailed reviews of psychometric properties of apathy scales are found elsewhere .22.1The contention that apathy might have separate, dissociable components originates from Marin's pioneering work in this field. Marin developed the AES out of a need for a formalised means of assessing apathy in clinical populations. To this end, his primary goals were to distinguish apathetic people from non-apathetic people, to separate apathy from depression and lastly to discriminate between different disorders based only on the degree to which they are apathetic  But the “when something good happens, s/he gets excited”). Similarly, all but two items loaded onto this general factor on the AES-I rating. Thus, all versions of the AES consistently produced a main general apathy factor. The second factor related to “interest” or “curiosity” but accounted for just 5–10% of the variance across administrations. Only one of the AES-C reports found a third factor accounting for 7–8% of the variance that represented lack of insight/concern and needing external structure for daily routines , informant (AES-I), and the patient themself (AES-S). It was originally validated in a mixed sample of 123 patients with AD, hemispheric stroke, depression, and healthy individuals. Marin devised eight, five, two and three questions for cognitive, behavioural, emotional, and general apathy respectively. However, a principal component factor analysis (PCA) actually revealed a predominantly single-factor structure for the AES with item loadings depending on how it was administered . The mairoutines . Despite“Do you get things done during the day?”, “Do you put little effort into anything?” and “Are you less concerned about your problems than you should be?”. It is not clear what makes these three items different to the general factor, but the loadings were moderate to low at .546, .436, and .230  and initiative (behaviour) domains. The remaining items actually related to drive and self-awareness (11%), and social aspects of apathy (9%), but not emotional apathy.This pattern of a main general factor and smaller “interest” factors has also been found in patients with stroke, subarachnoid haemorrhage, and psychosis , starklyDespite its theoretical divergence from what has been found in practice, including in his own original study, Marin's framework remains largely unchallenged. The continued use of the AES and some of its derivatives is perhaps because they benefit from good psychometric properties when measuring apathy as a whole construct  undoubteThe AS, which was designed by Starkstein and colleagues to assess apathy in PD, is one example of this. Surprisingly, no factor analysis was performed in their validation study , but subtypes of apathy, but little evidence that the former two are dissociable dimensions as originally envisaged. A major limitation of this study is that factor analysis is more appropriate than PCA when investigating latent structure of a broader construct , item 13  and 14 (“Would you consider yourself apathetic?”) due to their high cross-loadings. This new AS factor structure was not verified against formal diagnostic criteria or other independent measures, but self-reported apathy, which is vulnerable to bias. Nevertheless, with the modifications  an acceptable model fit was achieved across three different indices for factors representing an amalgamation of cognitive/behavioural apathy and separate emotional apathy in PD , action initiation , emotion and self-awareness . Furthermore, the global scores for the LARS and AES correlated strongly (r = .87), driven by higher correlations between the AES and IC (r = .84) and AI domains of the LARS (r = .65) and lower correlations with the emotional (r = .44) and self-awareness domains (r = .15) . These iIn fact, the authors themselves argue for a unidimensional structure of the LARS due to IC accounting for most of the variance (34%), although they do not report variances for the remaining factors . A laterA Spanish version of the LARS that was validated in PD patients describes the same original factors as Novelty and Social Life was the main factor (23%); followed by initiative and voluntary action making Behavioural Involvement (16.7%); emotional responsivity comprised Emotional Involvement (12.7%); and Judgement Skills included interest and self-awareness (10.1%). Interestingly, everyday productivity loaded on the first and third factors  and concern loaded on all factors leading to both subscales being excluded from the factors. The notion of productivity and concern were previously quite central to In schizophrenia patients, the LARS has a yet another factor structure . Not all“What do you do to keep yourself busy?” and “When you decide to do something, are you able to make the effort easily?” are cognitive items comparable to “What do you get up to during the day?” and “Do you decide to do things, or does someone have to push you a little?” that are behavioural items. The correlation between IC and Emotion can be similarly explained, illustrated by the resemblance between “When you don't manage to do something, do you try to find other solutions” and “When something's not working or when something unexpected happens, do you think about finding a solution?” that belong to the cognitive and emotional subscales, respectively. The result is that patients or family members who respond to these questions may not immediately understand how cognitive and behavioural apathy symptoms should be considered differently.The nature of cognitive and behavioural questions on the LARS might partially account for the close association of Even if cognitive and behavioural apathy are theoretically distinct, this separation may not exist in practice since assessments rely on what is observable, either by informants or by direct observation of the clinician. It is easy to appreciate how cognitive interest and behavioural initiative are highly related. Presumably, if a person is disinterested in certain hobbies, they are less likely to initiate the relevant actions. In the same way, if they lack the initiative to partake in their hobbies, then over time they will become indifferent to them and their interest wanes. Many of the items from the AES and other scales designed to assess cognitive and behavioural apathy separately are not nuanced enough to capture this distinction.“S/he is interested in things” is not dissimilar to the behavioural counterpart “S/he spends time doing things that interest her/him”. Likewise, the difference between the cognitive item “Getting things done during the day is important to her/him” and the behavioural item “S/he gets things done during the day” is extremely subtle. A patient might be capable of saying they would like to read but lack the initiative to do this. However, a clinician cannot always rely on a patient having adequate insight of their internal states, as demonstrated by the low reliability of the patient based reports  in addition to behavioural activation  and emotional sensitivity  in healthy people (“I start conversations without being prompted”) and emotional investment in a situation , it is perhaps not unreasonable to find such correlations.Recent support for social apathy comes from the AMI, which revealed a y people . Some siy people . Given tindividual emotional type which relates to interpersonal emotional expression/stimulation; and a social emotional type relating to external interactions such as empathy and concern for others  was more pronounced in PD patients compared to healthy older adults . Social Social apathy, as measured by the AMI, was also closely related to anhedonia, fatigue, and depression in a way that emotional apathy, for example, was not, again suggesting that it represents a dissociable domain , 2018. IOverall, our analysis supports the inclusion of a social dimension in the new diagnostic criteria for apathy , consistRegardless, any comprehensive account of apathy must also consider the overlap between social, cognitive, and emotional dimensions that has been observed  and how 3There is overwhelming evidence for the existence of an apathy syndrome. Most researchers are also agreed that apathy is fundamentally a multidimensional syndrome. The last 30 years has witnessed the framing of this syndrome in the context of three main domains that are broadly cognitive, behavioural, and emotional in nature . One difIn subsequent analyses, empirical testing of measures of apathy have largely been unable to find evidence for behavioural, cognitive and emotional domains, except perhaps for some studies that have used the LARS . There hWhy then, do so many apathy scales persist with a cognitive or executive account of apathy? We have argued here that in several of the original studies, proper construct analysis is often missing or an unsuitable alternative is used, e.g., PCA, simple correlation analyses, and comparisons to other scales that are similarly unverified or even unidimensional. However, clear behavioural and emotional dimensions are consistently represented across apathy scales, to varying degrees in the LARS , DAS Ra, and AMIShannon Dickson: Methodology, Writing – Original draft preparation, Reviewing and Editing. Masud Husain: Conceptualisation, Writing – Reviewing and Editing; Supervision.


We argue that racial matching is a strategy of stigmamanagement. This study draws upon interview data from 40 gay malecouples who formed families through surrogacy. We find thatpre-conception fathers seek racialized resemblance to reinforcekinship between themselves and their children. In California andEngland, gay men seeking donor eggs engage in racial matching, whichreveals that the racialized biogenetic model of kinship remainsdominant. This study makes a significant contribution to theliterature on race and queer family formation.How does race and location shape the reproductive decisions of gay menwho are intended parents? In this article, we propose the concept of We understand racial logics as specific uses of racializationthat individuals link to broader racialized social structures. Although whitenessis a privileged socio-racial status in both California and England, its boundariesand definitions differ in California when compared to England. In the local contexts of racism and stigma due totransgression of racial, sexual, and reproductive norms, we ask how gay men asserttheir constrained agency as they negotiate their imagined future children throughsurrogacy arrangements in these two locations.Gay intended parents employ racial logics as they evaluate the eggs and spermavailable on the fertility market. In other words, gay intended parents—like otherfamilies—negotiate the meaning of “race” when evaluating what constitutes a “good”or “good enough” match for them. In this article, we draw on transnationalresearch in California and England,In this article, we introduce the concept of “strategic racialization.” We thenreview the literature on the use of “racial matching” by lesbian and gay intendedparents in their choice of gamete donors. After detailing the research methods,participants, and the research sites, we provide an analysis of how gay maleintended parents made “queer decisions” in diverse local, and nationalcontexts.A White Side of Black Britain:Interracial Intimacy and Racial Literacy, an ethnography oftransracial families in Leicester, Twine employed ethnographic case studies to analyze the ways thatWhite mothers negotiated the stigma that was transferred to their mixed-racechildren born in interracial relationships. Twine argued that the meaning ofwhiteness, blackness, and “mixedness” was negotiated in the context ofworking-class whiteness being a stigma for Black families’ members, andblackness and “mixedness” being a stigma for White families’ members. Thus,what constituted transgressive behavior differed between the aspiring Blackfamily members and the White family members of working-class origin. One ofTwine’s central arguments was that “whiteness was a contingent form ofcapital” which was determined by the marital status, class background, andcultural tastes of the White mothers raising children of African-Caribbeanheritage. Developing a concept of racial literacy We contribute a much-needed case study that provides transatlantic data on gaymale family formation and makes a significant empirical and theoreticalcontribution to queer studies, sociology of reproduction, and sociology ofrace—specifically whiteness studies. Earlier research on the use of assistedreproduction and surrogacy by men in the United States and United Kingdomhas not included a comparative analysis of the ways that gay men employracial ideologies to strengthen kinship ties .EarlierOn the other side of the Atlantic, strategicracialization by gay male intended parents allows us totheorize how in these family forms there is consistency in perceptions ofrace as biological rather than a socio-political category. That is, gay menwho employ egg donation and surrogacy on both sides of the Atlanticconceptualize race as a form of property, a privileged asset, a geneticpossession that remains a crucial component of kinship. This fits in withthe traditional Euro-American kinship model, where biogenetic ties betweenheterosexual parents and their children were thought to give rise tokinship, that is, to “diffuse, enduring solidarity”  found that “[m]anywhite couples . . . indicated that they avoided selecting a donor who wasperceived to be of a different ethnicity because the child might thenencounter racism as well as homophobia” (pp. 651). In a demographic contextthat consists of the White majority, in particular “[t]he white couplesapproached donor selection as a practice that could help them ‘fit in’”: 651. SiWhiteWomen, Race Matters: The Social Construction of Whiteness,Intended parents use racial matching in the context of post-colonial racialhierarchies. In the United Kingdom, as well as in the United States andother former British colonies, whiteness is a form of cultural, social, andsymbolic capital, which provides many lifelong advantages . In WhitThe reproduction of whiteness is sustained by ideologies of racial purity. For thiThese racial logics are exacerbated by the ways that race becomes commodifiedby the fertility industry, in the process of “racial commodification” .A primeAs eggs are racialized and commodified, their providers and recipients conflatedesires for similar appearance with beliefs about a “cultural background”they share with donors, the “racial purity” of donors, and the eggs’ abilityto carry inherent racial qualities .As DaisThe global reproductive industry sustains such hierarchies of value. An exampleof this is commercial gestational surrogacy with egg donation in the UnitedStates, which was used by all the 16 families interviewed in the UnitedStates in our study. Also in the altruistic surrogacy model that is legal inthe United Kingdom, most intended parents resort to commercial egg donation.Among the 24 families interviewed in the United Kingdom, five pursuedaltruistic egg donation (their surrogates used their own ova), and 19pursued commercial egg donation.In this article, we show how gay male parents understand and mobilize racialhierarchies as they engage with the reproductive industry of egg donation.Race is a modern idea that was created during European colonialism torestrict, deny, or provide access to rights such as land ownership, voting,citizenship . A numbeBetween 2015 and 2021, one of the authors (Smietana) conducted 40 interviewswith gay singles and gay couples in California and England. The anonymizedinterviews were analyzed and the article was co-written together with theother author (Twine). Twine, based in California, provided expertise incritical race theory, and Smietana, based in England, offered expertise inqueer studies. This collaboration was part of a larger project .Men Having Babies andOur Family Coalition (in the United States), andSurrogacy UK and Two Dads UK (in theUnited Kingdom), (3) contacting local fertility clinics and surrogacyagencies, (4) participant observation and accompanying interviewees toclinics and surrogacy-related events such as agency anniversaries, and (5)snowball sampling. Among the 40 families who participated in this study, 16were interviewed in California and 24 in England. Interviews in Californiawere conducted in 2015 and 2016 at several sites including the participants’homes or in public cafés, and follow-ups and further interviews wereconducted in 2021 via video-calls. During the 2020–2021 pandemic, interviewsin England were conducted online via Zoom and Skype. All interviews weresemi-structured. Email communication was used to schedule follow-upinterviews with selected couples. In the analysis for this article, thefocus of comparison was the men’s understandings of race and ethnicity, andhow they were situated in their stories of family creation.In both research sites, several methods were employed to recruit participants,including (1) online posts and notices on community forums, (2) attendanceat events at organizations including The participants in the study were men who identified as gay. They includedpre-conception parents and parents of children conceived through surrogacy.They were between the ages of 24 and 52 years old. Among the 40 families inthis study, 32 self-identified as White and eight were interracial couples.In each interracial family, one partner self-identified as White, and theother self-identified as non-White and, respectively, Japanese American,Latino, Filipino, Brazilian, British Caribbean, Black British, and SouthAsian in two cases. Among the 40 families, 36 were couples (either marriedor in civil partnerships), and four were single parents. All of theparticipants were university educated and most had also earned post-graduatedegrees. Most were professionals. Thus, they were middle class and had theeconomic and other resources to enter into surrogacy arrangements. Some regions of the United Kingdom, such as London, Manchester, andLeicester are multiethnic and multicultural. Post-World War II, immigrationfrom former colonies dramatically increased the ethnic diversity and changedthe demographics in Britain’s major port cities. However, people whoidentify as White remain idealized and comprise the racial and political majority. For example, in England and Wales, where the interviewees came from,86 percent of the population is White.Field research including on-line and in-person interviews was conducted in twosites: England and California. In England, where altruistic surrogacy is alegally recognized pathway to parenthood, interviews were conducted inLondon and southern England. The United Kingdom is one of the fewjurisdictions in Europe where altruistic surrogacy is legal and has beenavailable since 1985, to gay couples since 2010, and to single parents since 2019. California is also one of the birthplaces of the Gay Pride Movement.With highly visible and politically powerful multiethnic LGBTQ communities,the San Francisco Bay Area is an ideal site to examine queer familyformation. Since the late 20th century, California has been a globaldestination for commercial surrogacy and services targeting the unique legalneeds of the LGBTQ community.California, a state with 40 million residents, has the largest population inthe United States, followed by Texas. California also has the largestpopulation of people classified on the US census as Hispanic or Latino ofMexican origin. In addition, in many parts of the state Mexicans comprise anethnic majority, and thus Whites are predicted by many to be an increasinglysmaller percentage of the state population. Only 36.5 percent of Californiaresidents self-identify as “White alone, not Hispanic or Latino,” and 39percent identify as “Hispanic or Latino.”The average cost of a commercial surrogacy arrangement in the United States was$130,000. All the arrangements in the US sample were gestational (i.e. twowomen were involved: a surrogate and an egg donor). In the United Kingdom,only altruistic surrogacy is legal, yet surrogates are compensated for thenecessary expenses, and additionally, commercial fertility clinics are usedin the egg donation process. In the UK sample, among the 24 families, fiveused traditional surrogacy where the surrogate used her own ova so no otherwoman was involved as an egg donor. Therefore, the cost of a surrogacyarrangement in the United Kingdom ranged from £12,000 in case of traditionalsurrogacy up to almost £60,000 in case of gestational surrogacy with eggdonation in a fertility clinic. Both in the United Kingdom and in the UnitedStates, the men drew on their own salaries and savings, loans includingmortgage, as well as support or inheritance from their own parents. Some ofthe men were also involved in some forms of LGBTQ activism withintransnational and local surrogacy and gay family associations.In the next sections, we will introduce four couples that represent thevariation in family composition  and the raciallogics found in the larger study. We will also include comparisons to otherstudy participants. Through our analysis of their “queer decisions,” we aimto illuminate the complex pre-conception calculations that gay men make asthey manage presumed stigma and reconcile their desire for “resemblance” orlikeness.Couple 1, Mike and Bob, are a White couple living in California. They representthe majority of the study participants, as 32 out of the 40 interviewedfamilies were identified as White and followed a similar racial logic,whether they lived in California or England. It was the logic of racializedresemblance between the father(s) and the child(ren).Couple 2, Jason and Max, are a multiethnic couple (Japanese American and WhiteAmerican) living in California. And Couple 3, Luke and Jack, are amultiethnic couple  living inEngland. Both of these couples have multiethnic and interracial heritage,and both of them follow a similar racial logic—which they also share withfive out of six  remaining interracial couples in the study.Indeed, it is also the logic of racialized resemblance between the father(s)and the child(ren), just like in case of the White Couple 1.Couple 4, Kevin and Arthur, are a multiethnic couple (brown-skinned Latino andWhite British) living in England. They follow a unique racial logic ofresemblance between the child(ren) and the racial majority group in a givenlocation. Some of the other study participants also mention this raciallogic, for example, Couple 2 in California. This logic may reveal importantlocal differences, given the racial majority in California is different thanin England. However, in no other case is this logic as clearly pronouncedand decisive as for Couple 4, Kevin and Arthur in England. a 44-year-old head of Human Resources and his husband, Bob, a40-year-old surgeon, are a White professional couple. They met in LosAngeles and subsequently moved to the San Francisco Bay Area, as a couple.They have been married for 8 years and are the parents of two boys betweenthe ages of 2 and 5. Their third child is currently being carried for themby a surrogate. They identify as Catholics and attend their local churchevery week—which they described as “a very Bay Area Catholic” church, wherethey were fully accepted. For example, their priest invited them to baptizetheir children there. Mike and Bob have also been involved in activism insupport of LGBTQ family inclusion, by participating in panels organized byMen Having Babies, or talking about LGBTQ familyrights in work settings.Mike,Mike, a native of Wisconsin, identifies as of German and English heritage. Bob,a native of California, identifies as White and is of Colombian and Irishheritage. They used the same egg donor, and they alternated as the geneticfathers. They chose which embryos were viable. As a result, Bob became thegenetic father of their first child, and Mike was the genetic father oftheir second. Their main criterion was choosing an egg donor who wouldphysically resemble them. A secondary criterion was not genetic but it wasthe social and educational status of the donor. They thought physicalresemblance would make it easier for their own children and for other peoplearound them to recognize them as a family:Bob:So, for me it was about educational level and intelligence, and I thinkMike was more interested in just overall looks.Mike:I wanted us to have a family that looked like us. Wewere looking for linkages, so I’m German and English. You’re Colombianand Irish . . .Bob:And so, we tried to think about what skin tones would we want. We wantedto look like a family. I think we’d really want to have kidsourselves. Obviously, we can’t. So, we did our best approximation ofguessing into a crystal ball. (. . .)Bob:Yes, to look like a family, I guess. Because we know they’re going tohave enough issues as it is.Mike:Having two dads I think is going to be hard enough. AndI think it’s just easier to relate. I don’tknow, I just thought forward about teenage kids when they’re really ina difficult time. I don’t know, I just want when the externalworld looks at us that it feels like a family. And then, I wantour kids to see resemblance in how we are as a couple,and not be one or the other. (. . .) I wanted it to be our family, andfor some reason resemblance was a way that I thought would bereally important to signal to others, and to feel like it wasours.Even in an LGBT-friendly context such as northern California, gay men may havenegative experiences with their own relatives when they choose to formfamilies. Mike and Bob’s natal families expressed shock by their decision tohave children. The couple recalled that at their wedding anniversary, theirfirst surrogate met Mike’s mother and Bob’s mother. The women had anhour-long conversation, which dispelled the doubts that their mothers hadabout commercial surrogacy. As a result, Mike and Bob were very conscious ofthe potential stigma that gay male parents could face from their natalfamilies. This explains why they placed emphasis upon physical resemblance“so as to make it easier for their children and themselves.”Mike and Bob represent the majority of White-identified gay couples in thisstudy. Like all of the couples in the study, they sought physicalresemblance or likeness between themselves and their future children. Thislikeness included features that they racialized, such as the skin tone, eyecolor, and hair color.We want themto look like us. We want the least amount of questionsthat ask us to validate our own family’sexistence. So we don’t need to make things moredifficult for ourselves.Our kids already are going to be different. And then, you know, sothen it’s going to be “Why have you got two dads?” And then ifthey look . . . if they are different skin colors, they’ll belike, “Well, why do you have different color skin to yourparents?” And they’ll be like, “Oh, we chose it for aesthetics”?Like it doesn’t make any sense, you know? On both sides of the Atlantic, without exception, the White gay men usedsimilar racial logics. We use the term racial logics to refer to theirbeliefs about the meaning of racial difference and, in case of these men,the privileging of features that are socially identified with Europeanheritage and whiteness. They sought to create the impression that they werebiologically related to their future children. In this view, they arguedthat this would help them minimize questions about their child’s lineage.For example, a White English couple Ed, a 48-year-old software programmer,and his partner, Theo, who is a 38-year-old chef, lived in London and hadtwo children between the ages of 5 and 8 years old. They formed their familywith the services of an American gestational surrogate. Ed was the geneticfather of one child, and Theo of the other. As Theo recalled, In the next section, we will meet an interracial couple who sought the“California look” for their baby, alongside likeness between themselves andthe baby. California, a state with the largest Latino population in theUnited States, provides a context in which there is a perception that whatsome call “the Latino look” is ideal and representative. This is complicatedby the fact that the US census category defined as “Hispanic or Latino”refers to Spanish surname and can include people who identify across a wideracial/ethnic spectrum. Roughly half of the Hispanics in the United Statesidentify as “White.”Jason, a 35-year-old White, and Max, a 36-year-old Japanese American are amiddle-class professional couple, who met in 2000, and got married in 2012.They live in the San Francisco Bay Area, a region in the United States whichis celebrated for being a welcoming and utopic space for LGBTQ families.Jason was born in Florida and grew up in rural North Carolina, and Max comesfrom southern California. Max is employed as a medical doctor in the localpublic hospital, and Jason works as an administrator in a medicalcompany.Like other gay male couples in this study, Jason and Max had long thought aboutforming a family with their own children. Until recently, they did not havethe economic resources to pursue what is an expensive pathway to parenthood.As they said, “We were much younger, and did not have any means to doanything of course. And so it was always very sort of abstract, in thefuture.” Thus, this method of forming a family is not affordable to all gaymale couples. Even with their professional jobs, Jason and Max needed totake a mortgage loan in order to pay for their surrogacy expenses.We were kind of looking for someone who might be a mix, like anAsian mix, maybe White-Asian. Because of course Max and I aredifferent races. He has Japanese descent, I’m a White guy andwith the prospect of each of us contributing sperm, there wasthe possibility that our children could look really nothingalike, even if they had the same egg-donor . . . We thought ifwe had an egg donor who was mixed-race, that the children wouldboth be mixed and that might make things a little easier.Following a medically unsuccessful attempt with Jason’s sister, also WhiteAmerican, as an egg donor with Max’s sperm (genetic father), they chose a“mixed-race” egg donor on the commercial anonymous donation marketrecommended by their clinic. They decided that they wanted a child that wasperceived as mixed-race: “Asian mix” or “White Asian,” in their own words.The men wanted their future child to reflect the multiracial lineage thatthey represented as a couple. From their perspective, it would be “easier”for the child. This is an argument that was also employed by White and Blackfamily members opposed to interracial family formation. As Jason said, This way, the couple said, it would be easier for the child to feel they belongto the family, and it would be harder for other people to question theirmutual family ties. Since they were also planning on having a second childin the future, they had decided to each be the genetic father of one of thechildren. Their logic was based in part on the age difference between thetwo of them. In pursuit of their goal of having two children who weregenetically related to both parents, they had agreed to use the same eggdonor of multiracial heritage so that their children would also physicallyresemble each other. Here we see the logics of likeness. In addition tolikeness between the parent and child, in this case two fathers sociallyclassified as racially distinct, we also see another form of likeness beingsought: between the siblings.thinking about the child having tonavigate yet another difficulty. One is having two gaydads.I also knew someone who had adopted a child from China. He wasCaucasian, he was White, and he just brought the baby home fromChina. And soon after that, he told me the story about one ofthe kids coming up to him and saying “how come your baby doesn’tlook like you?” And he thought, the first thing in his mind was“oh God, it’s starting already, I thought I would have a fewyears before I had to deal with this.” I mean you can’t controleverything that happens to your child by no means. But somethings you kind of understand as being important. I guess thatdoes play into it, The men described how they managed their anxieties about likeness and why theymattered. They quoted a recent media story about a child that had been takenaway from gay men who were approaching the end of the adoption process.Jason and Max argued that a genetic link between one of the men and thechild would have resulted in a successful adoption. In addition, likenessbetween the child and the fathers could protect their families—that is,decrease their vulnerability in public. Jason and Max’s emphasis upon agenetic connection was motivated not only by a fear of their marginalizationas intended parents, but also a fear of the child’s marginalization or evenbullying due to having gay dads. They believed that a shared physicalresemblance would help the child feel they belonged to the same family. Toillustrate this point, Max told several anecdotes about growing up withhalf-brothers from his father’s previous marriage. Having siblings who were“very different in lots of ways” contributed to Max’s perception that havinga different skin color among family members was problematic: Their desire to minimize their children’s and families’ discrimination inspiredJason and Max to seek an egg donor of multiracial heritage. While race is asocial category and many children produced by “biological” parents inheterosexual families do not look alike, racism and homophobia have realconsequences.From the photo we have of her she just looks like a Californian tome (. . .) There’s this California look that for me has emerged,that reminds me a bit of Brazil. You could come from all overthe world to live here and the next generation looks like amix.Jason and Max also sought likeness between the child and the society they wereliving in. It was the diverse Californian society, consisting of a myriad ofracial and ethnic backgrounds. This way Jason and Max, as a mixed-racecouple, also reflected the dominant mixed-race composition of California.They chose a mixed-race egg donor, who was part Filipina and part Swedish: This is a crucial quote, which shows how, for Jason and Max, mixed-raceness wassomething that characterized California. Against this background, amixed-race child would look “normal.” Ethnicity, race, state, and physicalappearance were all merged in the expression “California look.” In thecontext of California, where a multiethnic look is perceived as desirableand the “future” of the state, which has a significant population from Eastand South Asia, Jason and Max were invested in what they called the“California look.” Their approach was not merely about familial resemblancebut it reflected a desire to “blend in” to a look that has been marketed inthis region. This way, they said, the child would reflect the mixed-raceheritage that characterized the state in which they were living.The multiethnic majority and the strong Latinx presence in California makes itpossible for Latinx people to occupy a prominent place in the localhierarchies of beauty. This background may have been relevant to the factthat a single White Jewish dad through surrogacy interviewed in this studyin San Francisco, Phillip, chose a Latina egg donor. Phillip, a 52-year-oldfreelance photographer, said he felt attracted to Latinx men as sexual andromantic partners, that is why he chose a Latina egg donor. On the contrary,for the two single White men interviewed in our study in England, the choiceof a White egg donor was obvious.The cases of the men in our research also showed how racialized categories weremobilized in malleable and surprising ways. For example, in Jason and Max’sthinking, some categories, such as “Caucasian,” were incorporated from thevocabulary used by fertility clinics. Other terms, such as “Californialook,” were created and racialized.In contrast to the choice of egg donor, in the choice of surrogate, race seemedless relevant. The surrogate’s skin color and ethnic identification were notcrucial for most men in this study. However, the politics of race alsobecame apparent when Jason and Max were first matched to a gestationalcarrier of Native American descent. This would potentially raise issuessince, as Max said, “any child born of a Native American in the US is amember of the tribe, and so in adoption of that child, the tribe has to begiven the first right to adopt.” At least in this one case the history ofcolonialism, cultural genocide and the structural racism that disrupted thefamily formation of Native Americans, becomes apparent. The ongoingsegregation, impoverishment, and legacies of genocide, and the forcedassimilation and adoption of Native American children  arereflThe primary logic of racial matching that Jason and Max followed was theirsearch for racialized resemblance between themselves and their children.This logic was also used by almost all the families in this study,regardless of their own racial identification and geographical location. ButJason and Max also referred to another logic: resemblance between the childand the racial majority in their state. They found the multiracial contextof California supportive for their multiracial family. This logic wasmentioned only by some of the study participants, such as Kevin and Arthurin England, whose case we discuss at the end of this article. However, formost of the men who referred to this logic, it was secondary. Instead, theprimary objective for almost all the interviewees was achieving racializedresemblance between themselves as the fathers and their child(ren)—and insome cases also among their children as siblings. Resemblance between thefathers and the children was also the aim of Luke and Jack, a multiethniccouple in England whose case we discuss next.Luke, a 32-year-old brown-skinned manager at a media company, identifies asAustralian-Filipino. Jack, his husband of 5 years, is a 30-year-old managerat a media company and identifies as a White Australian. Their daughter was13 months old at the time of the interview. They met a decade earlier inSydney and later moved to the United Kingdom as a couple. Luke is activelyinvolved in the LGBTQ community at his company. As UK residents, theytraveled to Canada to engage in an altruistic surrogacy contract to form afamily. They decided to employ assisted reproduction, in part, because theybelieved it would allow them to prioritize the genetic links and increasephysical likeness between themselves and their future child. Like othercouples, both heterosexual and same-sex, they understood that skin colorhierarchies and racial discrimination would have lifelong consequences fortheir children. Skin color is one feature that is “read” by others andassigned meaning and value . Skin coTheir pre-conception planning included how to maximize the probabilities thattheir child would share physical traits of both parents. A primary concernthat Luke and Jack shared in the interview was how they would be perceivedas a family unit. They wanted to avoid the emotional harm of not beingpublicly recognized as a “natural” family unit. This was also an issue amongheterosexual multiracial couples in the United Kingdom. In her research inthe United Kingdom among multiracial families not using assistedreproductive technologies (ART), I have, like, five grandkids in my family already, huh? So mysiblings each have kids, whereas my partner didn’t have kids,grandkids in his family. So that’s, that was really like whatmade the decision. Actually, . . . so when we got to thefertility clinic to do the sperm donation, we had everyintention of fertilizing the eggs 50 - 50. Well, what transpiredwas we didn’t get as many eggs as we wanted. So there was onlylike seven. And I just thought, you know, like, to maximize thechance of, like, my partner’s shoot having a successfulpregnancy, let’s just use his.Luke and Jack decided that Jack would be the genetic father of their firstchild. This decision was motivated by the fact that none of his siblings hadchildren, which had denied his parents of grandchildren. As Luke explained, Just because we knew that we were likely using Jack’s sperm andhe’s Caucasian, we really wanted the child to look like me alittle bit, so I mean like a Filipino. And there were very fewFilipinas in Canada, but we did find one. . . . So the funnything is that it completely backfired because our daughter lookspurely Caucasian, not Filipino at all! And we later found outour egg donor actually isn’t like a full Filipino, she has likea Caucasian grandma, and she’s got like some, like East Indianin her as well. So she was actually like, quite mixed, but sheidentifies as Filipino.Since Jack identified as a White, the couple wanted a Filipina egg donor whoshared Luke’s Filipino traits. This would help them create a mixed-racechild. To their surprise, their daughter looks, in Luke’s terms—“purelyCaucasian.” In response to the question about this decision who would be theegg donor, Luke said, In this case, we can see that the racial logics embraced by Luke and Jackappear to be a product of binary thinking that assumes one’s physicalphenotype reflects “discrete” and separate racial categories. As aninterracial couple, Luke and Jack were committed to producing what theythought of as “likeness.” Using their logics, they treated socio-politicalcategories such as “Caucasian” and “Filipino” as if they reflected “natural”biologically pure categories. So phenotype was assumed to follow geneticheritage. Luke expressed contradictory logics. Reflecting upon how he andhis husband ended up with what they call a “Caucasian” daughter, he saw thehubris in his thinking. He now claims that being a parent is a “social” notbiological relationship.I couldn’t careless what people think. . . . being a parentisn’t about, like, a genetic connection. You don’t need to looklike each other. But this is something that I thinkI’ve, I’ve learned after the fact. Yeah. Becausewe of course, start with some, you know, ideas and then as you,as you go, you see it in practice.[Having a White daughter] is hilarious because that’s exactly whathas happened! And it isn’t an issue. We’ve got one [frozen embryo] as a backup. (. . .) we’re keeping iton ice, it costs like 400 bucks a year, so it’s not tooexpensive. We’re just going to keep it on ice in the event thatwe have, like, a sibling journey down the track. And I think theidea is, like, we’ll try and use that. And if it doesn’t workthen we’ll go through the process of, like, finding an egg donoragain, this time we will flip it, so we’ll try to get aCaucasian donor and use my sperm.Ironically, this is still an issue. Luke and Jack are contemplating using thefrozen embryo produced with the help of the Filipino egg donor they used intheir first pregnancy and with Jack as the genetic father. If that embryo isviable, then their future child will be genetically related to its sibling.If that embryo is not viable, then according to Luke they might as well“flip it” and “try a Caucasian donor” with Luke as the genetic father: This showed that the couple’s thinking about genes and race was full of openquestions. The same referred to the very meaning of genetic links betweenthe parents and the children. On one hand, Luke said that having a familymeant to him having a genetic connection. On the other hand, not only was hehimself the non-genetic father to his child but he was also consideringbecoming a sperm donor for a friend, as he mentioned later in the interview.The meanings he gave to genetic links were thus multiple and sometimesapparently contradictory.Like the majority of the men who participated in this study, Luke and Jackwanted their child to physically—and racially—resemble them. However,likeness between the child and the dominant White racial group was notimportant to them. This was also the case for most of the other multiethniccouples in this study , as well as the White fathers . Almost all of them prioritized achieving racializedresemblance between the fathers and their children, both as a proxy forkinship and a strategy against stigmatization. This included multipledimensions such as the parents’ and children’s feeling of belonging to thefamily, and the display of such belonging to other people.Although our children would be true siblings, we wanted them tolook similar as well and look like they both belong to us . . .To keep this kind of resemblance and connection, for a sense ofbelonging, and also, you know, for cohesion with our familyunit. You know, it’s very superficial, but it’s also somethingthat can be important for children in terms of representation,and belonging . . . Or excluding one parent . . . I know, it’svery superficial. It’s quite an important consideration when youhave a setup like this and a family structure like this. . . .That’s what I mean by kind of a cohesive family unit. So if youlooked at us all, you would think, you know, that that’s a goodset, you know, you can’t tell immediately what’s happened orwho’s done what, and who’s donated, what sperm or whatever,because that’s where you start to invite really trickyquestions, or people start to treat the children slightlydifferently.It was recapitulated clearly by Paul, a Black Caribbean-British 37-year-oldmarketing professional, married to Federico, a 42-year-old White Italianreal estate professional. At the time of the interview, they lived inLondon, had a young son through surrogacy in the United States, and were inthe process of another transnational surrogacy arrangement. They used thesame mixed-race egg donor, who was half-African-American and half-Italian.Paul explained, Most multiethnic couples, such as Paul and Federico, or Luke and Jack with whomwe started this case, seemed to care above all about creating kinshipbetween themselves and their children. Yet they were not indifferent to thefact they belonged to a racial minority. Paul was part of a global Facebookgroup for Black gay dads, which, as he said, offered him a safe space todiscuss unique issues his family could face, such as racism. Some otherinterviewees took a step further: they aimed to prevent racism at the earlystage of the choice of the egg donor. This was the case of Kevin, the Latinogay dad in England, whose case we discuss below. grew up in a working-class immigrant family in New York. He moved tothe United Kingdom in 2000. He met his husband, Arthur, a 40-year-old WhiteBritish citizen, who grew up in a middle-class family in southern England.They are the parents of a 3-month-old daughter. They have been together for20 years, and married since 2013. They both agreed that they wanted theirchild to know her origins. They ultimately used a surrogate who was also thegenetic mother, which is now referred to as “straight surrogacy”  rather than “hostsurrogacy” . Kevin, theLatino dad, decided that he had a strong preference for a White child.Kevin, a 42-year-old brown-skinned man who identifies as Latino,In contrast to Luke and Jack, the multiracial couple in the United Kingdomdescribed earlier, Kevin’s logic was that he could protect his future childfrom racism or what he understood as racial abuse in the United Kingdom, bynot having a child racially marked as “not White.” So they chose to use theeggs of a British woman who was classified as White. This decision wasmotivated by Kevin’s experiences with racism. He believed that his not beingphysically qualified for “whiteness” would be a non-issue if his husband andfuture child were both White. So his thinking was that a White child wouldblend in or be accepted more easily by his White husband’s family andbroader society. In contrast to the California couple we met earlier, the“multiracial look” is neither celebrated nor normative in the United Kingdomeven in multicultural urban communities, as it is in California. As we haveseen in other couples, their pre-conception decisions were shaped by notionsof “racial difference” and the social realities of racism. However, whatconstitutes a problematic difference varied.We have a very strong connection and relationship with Arthur’sfamily [in the UK]. Arthur’s sister’s children are born throughan anonymous donor . . . So, so this is a family where yourchildren come into the world in very different ways. And there’sreal love and compassion in making those connections with theirfamily, based on, you know, the things that the oldergenerations see in the children about, you know, oh, “you look .. . that looks like the grandfather,” or, you know, they lovethose connections. For me, having my dead parents and my familyliving so far away, it was inevitable that our child wasn’tgoing to have those stories and some of the stories about mypast.In the case of Arthur and Kevin, it was not the White partner who preferred aWhite child. It was a familiarity with everyday racism that led Kevin toconvince Arthur to be the genetic father. Moreover, Kevin thought, the childmight feel more included in the day-to-day extended family if she sharedsome looks with them—and, as it later turned out, race/ethnicity was part ofit. As Kevin explained, we are a very White, very Britishworld.” Kevin went on to explain the way he perceived andexperienced racialization. He understood White privilege as a form ofcultural and symbolic capital: I’m gonna have a tall daughter, who’sgoing to . . ., who’s going to be raised in an educated,middle-class family, who . . . she will have lots ofopportunities, and which is very different to myworking-class, Latino roots, where, educationally I’m the onlyone that really . . . you know, I, I’ve done really well. Butactually, my daughter has lots of privileges in a way in which Ididn’t have. And and I do feel, I think the thing I feel ashamedof, and I do feel ashamed is that, that that did play a key partin some of this decision, even if I don’t talk about it, even ifI don’t talk about it. I’m sure it did play a big part.I live in and work in very White dominant institutions. And as asenior clinician . . ., it’s something that I have to, you know,I have to fight for, in a way in which I don’t think my daughterwill, and, and so I will be, I would be lying if I didn’t saythat somewhere deep down, and it’s, and I feel ashamed saying itout loud. You know, today, I went for her check, and my daughteris rather tall and rather long, for a baby. And I was justthinking, yeah, The elision of class and race status was also part of Kevin’s narrative, as ifthrough a White British identification one could somehow acquire amiddle-class status more easily than through a Latino background. ThatLatino background, Kevin feared, would expose his daughter to racism that hehad been facing as a member of the Latino minority in the United Kingdom.Describing the racial context in which they live, Kevin noted “I dorecognize that perhaps, to a certain extent, did play a bit of a part in, inmy decision, because before conception: that’s also recognizingoppression and marginalization, and she would be cominginto a world where she still has two dads, if she’s comingto an interracial intercultural family, she’s gotmy surname. So she has got a Latina surname, you know, she isgoing to have lots of different areas or aspects of her lifewhere she’s going to have to fight, she is a woman in a world ofmisogyny. . . . She will still have a Latino father. (. . .) Iknow oppression and marginalization. Fighting is tough.Fighting is exhausting, and I don’t want my daughter tohave to fight any more than she has to.I said to Arthur . . . the role of a parent is to make sacrificesand to do what’s best for their child. And, and I do see that mydecision to not be the bio dad was a sacrifice, it was asacrifice, because I also had to weigh up what world we live in,and I would like my daughter to have the best start in life. . .. to a certain extent, Arthur initially assumed that because they had selected a White Englishsurrogate-egg donor, that his Latino husband would become the geneticfather. Thus, he perceived their future “mixed race” child would reflect theracial-ethnic identifications of both fathers. Arthur also thought that theywould each take turns as genetic fathers. Arthur eventually agreed withKevin’s racial reasoning to privilege his White extended family. Kevinanticipates his daughter’s future struggles as the child of a Latino. Hestated, “I feel sad that I had to say that or do that, in lots of ways.”Below we see the deep thought that Kevin has given to the intersecting formsof stigma that he is reflecting upon Here, Kevin clarifies that as a brown-skinned Latino he has personallyexperienced racism. He has decided that he does not want to transfer hisstatus to any future children. Kevin and Arthur’s story suggests that thereproduction of whiteness and prior experiences with racism were themotivation for their decisions. Kevin made the assumption that as a residentof England, it would be easier for his daughter if he transferred White skinprivilege to her, so that she could pass as English. Even if Arthur hadinitial objections, the couple agreed that likeness increased the child’schances not only to become part of the extended family but also to haveracial privilege in the United Kingdom. On the other hand, in contrast toEngland, in much of California Latinos are not a minority group. A half ofthe Latinx population in the United States self-identifies as White andtheir children are often perceived as White. Latino is therefore not aracial category, but an ethnic one that includes people who are physicallyeligible for whiteness.strategic racialization. Theinterviewed men undertook strategic racialization with the objective ofmanaging racial transgressions, alongside the transgressions they alreadymade as gay parents and users of surrogacy. We found that gay parents mayencounter two types of stigma: (1) racialization as an interracial ormultiethnic family, (2) being perceived as transgressive sexual dissidents,in national contexts where same-sex marriage has been legalized not longago, in 2013 in the United Kingdom, and 2015 in the United States.Nevertheless, the legalization of same-sex family formation does not preventgay men from experiencing marginalization. Consequently, in theirpre-conception negotiations, they try to restrict potential forms of stigmaby presenting themselves as a “natural” family. The gay male parents in thisstudy sometimes embraced hegemonic ideologies by default. These areideologies that translate cultural and physical differences into “natural”and biological categories based upon ideas that posit racial purity and, byextension, can support what some ethnic minorities experience as whitesupremacist aesthetic hierarchies.In this article, we have drawn on a transatlantic study of gay male parents todocument the ways in which they undertake racial matching in the choice ofegg donors in surrogacy arrangements in California and in England. Buildingon the work of In the process of strategic racialization, the men followed two racial logics.The primary logic used by almost all the families in the study, whether theyidentified as White or multiethnic, was the logic according to which the mensought to achieve racialized resemblance between themselves and theirchild(ren). This logic was used by almost all the men interviewed both inCalifornia and England. This points to the enduring relevance of traditionalEuro-American kinship , as the The other logic the men employed in racial matching was seeking resemblancebetween their child(ren) and the racial majority in their broadercommunities, such as their extended families or the states they were livingin. That logic was usually secondary and only few of the men referred to it.Yet importantly, they were mostly multiethnic couples. They talked about theracial majority as a potential source of empowerment and support for theirfamilies and children, who could easily “blend in.” These men’s perceptionsof risk and potential harm to their future children can, paradoxically,reinforce the locally dominant racial hierarchies. In situations likeCalifornia, a “White” look is not always perceived as superior or desirablein the same ways as it might in the UK context. The men interviewed inCalifornia did not refer to the White majority as a model with which theywould like to fit in. On the contrary, some of them referred to themultiracial “California look” and Latino look as desirable characteristics.On the other hand, in England, some of the interviewees mentioned that itwould be beneficial for the children if they did not stand out from theracially dominant White society, institutions, and families. These findingssuggest that construction and performance of race is context-dependent. Ithas unique characteristics in the families of gay men interviewed inCalifornia as compared to those interviewed in England.Our findings represent the first study to offer a comparative analysis thatilluminates and problematizes the strategies employed by gay men in theUnited Kingdom and the United States. Our findings also echo previousstudies on racial matching by lesbian mothers and heterosexual parents as well


Patient-Reported Outcome Measures (PROMs) aim to evaluate the quality of care based on the perspectives of patients rather than clinical indicators. Qualitative research is needed to identify these perspectives in people with type 2 diabetes.To identify, for the first time in Israel, aspects valuable for people with type 2 diabetes that can be relevant for PROMs in diabetes care.A qualitative study included three focus groups totalling 19 people with type 2 diabetes. Inclusion criteria were: (1)type 2 diabetes, (2)diabetes duration of at least six months, and (3)adults aged 45–80 years. Purposive sampling enabled recruitment of heterogeneous participants. Also, two experts’ panels with healthcare providers involved in diabetes care (n = 23) were conducted to provide triangulation of information . Discussions were recorded, transcribed and thematically analysed.Four domains were deemed valuable for people with type 2 diabetes: (1)challenges of living with diabetes, including reduced physical function, healthy lifestyle struggles, sexual dysfunction, and financial burden, (2)mental health issues, including depression, distress, anxiety, frustration, and loneliness, (3)self-management ability, including management of lifestyle modifications and treatment, knowledge about the disease and treatment, and (4)patient-clinician relationships, including the devotion of clinicians, trust in clinicians and treatment, shared decision-making, and multidisciplinary care under one roof. Experts favour using PROMs in diabetes routine care and even acknowledged their necessity to improve the treatment process. However, only some of the domains raised by people with type 2 diabetes were identified by the experts.There are content gaps between perspectives of people with type 2 diabetes and their healthcare providers. PROMs are essential in addressing issues largely not addressed in routine diabetes care. We recommend that researchers and healthcare providers, who intend to utilize PROMs for diabetes care, consider the aforementioned domains. Healthcare has become more patient-centred in recent decades, with the measurement of quality of care gaining increasing attention , 2. EvalPatient-Reported Outcomes are defined as ‘any report coming directly from patients, without interpretation by physicians or others, about how they function or feel in relation to a health condition and its therapy’ . PROMs aDiabetes care aims to prevent complications and maintain people’s quality of life . The AmeThe current study is a focus group (FG) qualitative study. It is part of a larger study that conducted in the framework of the Israeli National Program for Quality Indicators in Community Healthcare (QICH), which aimed to incorporate PROMs for diabetes within the Israeli national quality indicator set for diabetes. The QICH quality indicators include clinical indicators  that were chosen and updated based on the best available evidence, as well as on national and international guidelines, with a consensus of representatives from professional organizations , 23.To be invited to the FG, people had to be diagnosed with type 2 diabetes, and have the disease for at least six months. We included only adults aged 45–80 years old, as type 2 diabetes mostly occurs after the age of 45 years . We did Purposive sampling (heterogeneous) was utilized to recruit people with diverse demographics  and diabetes duration based on electronic medical records. Eligible patients were contacted by phone, they received explanations about the study and were invited to participate. To ensure heterogeneous sample, participants were recruited from the outpatient clinics of ‘Hadassah Medical Center’  and primary health clinics of the ‘Meuhedet Health Services’ .Data saturation, which is the most common guiding principle in qualitative research , 26, wasFG sessions were conducted between May 2017 and March 2018, in a private conference room in the hospital or at the health plan, and each lasted for 90 minutes. Prior to beginning the discussion, people with type 2 diabetes signed informed consent form and then completed an anonymous short demographic questionnaire. The FGs began with a brief description of the aim of this study and participants were informed that they had the right to leave the FG at any time.A semi-structured open-ended topic guide  was usedTwo of the groups were conducted in Hebrew, and one conducted in Arabic, according to the participants’ spoken language. The majority of the population in Israel is Jewish (Hebrew speakers) with an Arab minority (Arabic speakers). The Jews and Arabs differ in their religion, culture and socio-demographic characteristics. We deliberately constructed a FG among Arabs to reflect the diversity of the ethnicity. All FGs discussion were led by the first author (N.A.) who is bilingual (Arabic and Hebrew) and notes were taken during FGs discussion by a research assistant (Arabic or Hebrew speaker). Interactions between participants provided meaningful insights and there was a sense of motivation and openness among participants in the discussions. The discussions were recorded with participants’ consent.A professional transcription company transcribed (by an Arabic or Hebrew speaker according to the FG participants’ spoken language) the FG discussions from the digital recording to Microsoft Word files. A comparison between recordings and transcripts were done by the first author to ensure accuracy.To achieve a comprehensive understanding of the research questions we used triangulation of information , i.e. inTo attain a variety of opinions and a representative sample, healthcare providers were recruited based on their specialties: diabetes nurses, family physicians, diabetes physicians, social workers, and quality of care and PROMs experts.Two experts’ panels were conducted, the first panel took place within a conference initiated by the Israeli Ministry of Health that aimed to promote PROMs in Israel and the second panel was conducted as a continuation of the first one. The experts’ panels were led by N.A., O.M.1 and R.C.M., and were conducted in Hebrew (according to the participants’ spoken language). The experts’ panels took place between May 2017 and March 2018 (concurrently with the FGs). The experts’ panels began with a brief introduction about PROMs, followed by asking participants to describe their experiences of diabetes care, perceptions of valuable aspects of diabetes care for people with type 2 diabetes and opinions regarding PROMs. The discussions were recorded with participants’ consent and later transcribed.The data were thematically analysed , 28 concThe research group consists of one PhD student (N.A.), two professors-supervisors (O.M.1 and R.C.M.) and three researchers  with extensive experience in research in diabetes care and qualitative research. None of the participants in the experts’ panels was part of the research group. The research was part of the PhD thesis of the first author (N.A.). Prior to the current study, N.A. underwent training in leading qualitative research including FG discussion, data collecting and analysis.This study was approved by the Helsinki Committee of ‘Hadassah Medical Center’ and ‘Meuhedet Health Services’. Written informed consent was obtained from all participants in the FGs.People with type 2 diabetes participated in the FGs had a mean age of 65.1 years (range: 45.2–76.8). Participants were diverse . All religious groups were represented, and all but three participants were married. The median time since diagnosis of diabetes was 14.5 years (range: 0.5–36 years), and 8 participants were receiving insulin treatment.Participants in the experts’ panels (men:10 and women:13) had diverse professions . All participants had expertise in the treatment of diabetes in the community.The analyses revealed four domains that were deemed important for people with type 2 diabetes: (1) challenges of living with diabetes, (2) mental health issues, (3) self-management ability and (4) the patient-clinician relationship. The following describes these domains and their sub-domains and provides exemplifying quotes.This section introduces five main challenges emphasized in the groups: reduced physical function, healthy lifestyle struggles, hypoglycaemia, sexual dysfunction and financial burden due to diabetes.Physical function and fatigue were raised frequently by people with type 2 diabetes (PWD). Diabetes reduced physical function, which was accompanied by fatigue. For example, a 45 year old man reported that after his diabetes diagnosis he was: ‘(…) more tired in the afternoon’ . Participants mentioned that feelings of fatigue affected their daily lives, limiting them in several respects, including performing home duties, engaging in physical activity and work productivity: ‘Walking, functioning, home duties and dishwashing [is hard] because sometimes diabetes is very exhausting’ .You are less productive at work (…). There are things that are hard for me because of the fatigue, so I need workers to help. [Other: Do you relate it to diabetes?] Of course’ .Additionally, a PWD noted: ‘I want a medication or advice on how to behave to eliminate fatigue, at least’ . It is worthy to mention that some patients, mainly newly diagnosed individuals, wondered if fatigue was related to diabetes: ‘I suffer from fatigue, but I don’t relate it to diabetes. Now I am hearing from everybody that it could be; I’m very tired, I cannot walk for a long time, I feel fatigued (…) Now when I hear from others, maybe it is related to diabetes, I don’t know’ .Several participants voiced a desire for a treatment to eliminate fatigue: ‘Healthy lifestyle struggles. Leading a healthy lifestyle, especially regarding diet and physical activity, emerged as essential challenges for people with diabetes, who reported that they wanted and tried to achieve a healthy lifestyle, but it was difficult to achieve. Regarding diet, people with diabetes noted that they faced many restrictions, stating that they were limited in their food options and that maintaining a healthy diet was difficult, particularly for those working outside the home.‘The diet is very difficult, it’s so hard. Glucose, salt or fat, or any of those things aren’t allowed. The biggest question is how to manage in life without eating anything, just vegetables all the time. And it’s hard because I am often outside the home’ .‘If you engage in physical activity, even walking, it [glucose] decreases. I think it helps, but with the fatigue, it’s hard’ .Regarding physical activity, people with diabetes emphasized that fatigue (due to diabetes) and financial factors were barriers. One remarked: ‘At parties it’s very hard. They know I’m diabetic and using insulin. It’s annoying when others pressure me to eat things that I should not’ .Support from others, especially family, was raised as essential for achieving a healthy lifestyle . However, participants also found it challenging and annoying when others pressured them to eat unhealthy foods, especially in social meetings: Hypoglycaemia was described as a major problem. Participants shared their hypoglycaemic experiences and described the events: ‘I felt like a zombie; not connected to my surroundings. I almost lost consciousness many times, I had sweaty palms and felt severely weak’ .My biggest problem (…) was that for four months I had severe hypoglycaemia every night. I woke up in the middle of night looking for something to eat, I walked while sleeping, and I fell many times (…) I don’t want to be hypoglycaemic again’ .Hypoglycaemic experiences were described as traumatic and participants feared experiencing them again: ‘Fear of hypoglycaemic events is very important’ .Experts highlighted the importance of asking individuals about their fear of hypoglycaemia: ‘Sexual dysfunction due to diabetes was raised in the groups by both people with type 2 diabetes and experts. A PWD mentioned:Diabetes negatively influences many things, I was in bad condition, I was depressed, and it affected my social life. Let’s be honest, when a person has a high glucose level, their life with their partner changes, it’s not a normal life. Maybe the person won’t talk about all this, but when I lowered my glucose level, it gave [me] more power and more enjoyment’ .‘‘I want to ask [using a questionnaire], for example, about impotence, since we usually don’t ask, as it’s uncomfortable, since the patient is accompanied by a family member. And answering a questionnaire will be more comfortable for the patient’ .The experts particularly mentioned asking individuals about sexual dysfunction, which is relevant for both sexes. And, they also noted that this issue usually does not arise during medical visits. One diabetes physicians remarked: financial burden associated with diabetes, primarily due to costs of medication, was evident from participants’ responses and appeared to be a barrier to treatment for some individuals. An elderly woman mentioned:In addition to physical struggles, the ‘There’s a new medication that’s effective. But the packet costs 250 shekels [73 USD]. What about the low-paid workers or the elderly who live off of their pensions, how could they pay for that? They cannot’ .You have to work out, it costs money. You’re less productive at work, that also costs money’ . Additionally, a woman who experienced kidney failure said: ‘I need to go to the gym. But the gym costs money. In our neighbourhood, there are no suitable parks for walking’ .In addition, gym fees and the loss of productivity at work increased financial burden. A man remarked: ‘The mental aspect is important. It’s important to ask not only about depression, but also fear, worry and anxiety’ . PWD suggested: ‘I think they [health plans] should employ a health-provider: a physician or a nurse to address the individual’s psychological issues’ .Diabetes is a demanding chronic disease, affecting physical and mental health. Individuals with diabetes experience a variety of emotions and mental health issues, including depression, distress, anxiety, fear, frustration, and loneliness. Mental health was one of the most prominent issues emphasized by individuals and experts. One expert remarked: ‘‘Diabetes causes depression because suddenly you have to change your lifestyle completely. You have to think about what you put in your mouth, what you do, you need to sleep well without getting up to go to the bathroom several times’ .A diabetes diagnosis requires that individuals implement lifestyle modifications and restrictions, which may cause depression. For example, a newly diagnosed PWD reported: Another cause of depression PWDs mentioned was needing medications, especially among those needing multiple medications.‘When going to the pharmacy, people feel as if they’ve been to the supermarket. You collapse immediately after carrying all the medications. You’ll be depressed just from the number of medications’ .‘My father had diabetes and, at age 80, his leg was amputated. This led to many thoughts, to fear and anxiety’ . A newly diagnosed PWD related: ‘I read about diabetes and its complications; it scares me’ .Anxiety and fear over developing diabetes complications were the dominant mental health related aspects mentioned across all groups: ‘I want to die healthy, I don’t want all these complications, I don’t want to experience these complications’ .Preventing complications was considered the most valuable outcome among participants. As one PWD mentioned: ‘We need to add some questions [PROMs]concerning diabetes complications, since this is what we’re trying to prevent’ .The experts mentioned that mental health aspects typically do not arise during medical appointments, suggesting that health providers could use PROMs as a signalling system to help assess when and with whom they should address mental health issues. An expert remarked: The treatment is in her own hands [the individual’s responsibility] and not in that of the physician’s (…) I was determined to reduce my glucose levels’ . Diabetes physician mentioned: ‘Lack of treatment empowerment is one of the problems. Individuals should advance the success of their treatment’ .A meaningful domain was the capacity of self-management, i.e., the ability to manage the lifestyle modifications inherent to living with diabetes, having symptoms and managing treatment. The person with diabetes is the cornerstone of the treatment process, as a PWD emphasized: ‘‘There’s a lack of information. I have no idea what to do. I would like to comprehend the information and not only to receive instructions, to understand what I’m doing’ .People with diabetes make daily decisions regarding food, activity and medications. To make the right decisions, individuals need guidance from their health providers. Individual empowerment, being informed about one’s disease and treatment, stood out as essential for successful self-management. However, individuals complained that they did not receive enough information from their health providers: Lack of knowledge about the disease, especially among the newly diagnosed, caused confusion. To prevent confusion, participants preferred receiving relevant information from health providers rather than searching on the internet.The problem is that, (…), I just don’t know! There is diabetes type 1 and type 2. I’ve read a lot, but I don’t know what is relevant to me and what is not. (…) Since there is lack of knowledge, the more I read, the more I’m , yes, more scared but also more confused’ .‘‘Today, patients have many sources of information to read about diabetes. I think it could be problematic. If we have an informational or support group, we can learn about diabetes, and its complications. It could increase patient’s compliance .PWDs believed that raising awareness about diabetes and its treatment would increase compliance:The patient-clinician relationship was prominent in all the discussions and primarily reflected participant demands.Thedevotion of clinicians was emphasized by the PWDs as a critical factor increasing their adherence: ‘I go to my check-up by him [the physician] after some time has passed and I know he’s devoted so much to my care. He wants to help me and then, what? I won’t listen to him? No, he’s helped me so much’ .Trust in clinicians and the treatment is a key component of the treatment process according to the experts. One diabetes physicians stated: ‘A very simple question I ask myself with every patient is, does the patient believe in me? Does the patient believe in the medications I give him? These are the two main questions’ .The key question is: Does the patient believe in his treatment? It is highly important for diabetes care. It may not be so important for other diseases, such as cancer and multiple sclerosis, for which patients believe completely in their treatment. In diabetes, there is much less belief and patients want natural treatment’ .Another physician remarked: ‘‘The pills are harmful, 40% of patients have kidney disease complications because of medications’ . In another group, a newly diagnosed PWD reported: ‘I have read about medications that cause harm. Yes, they’re harmful in the long term. Maybe not in the short term, but if you take medications for years it’s not good’ . One PWD summarized: ‘I think we need someone to guide patients who don’t want to take medications, maybe to go in a natural way, use alternative medicine. Why can’t the health plans suggest a solution for this? Or maybe they do, but we don’t know about it’ .Indeed, PWDs stated that they do not trust antidiabetic medications and believe they are harmful and cause complications. As one PWD noted: Shared decision-making was another demand that people with diabetes raised. They wanted an informative treatment plan and the option to choose another treatment plan if they do not accept the proposed treatment, medications, or diet.I don’t want to be given a limited approach. What did the dietitian tell me? This is the diet that I give you and if you don’t (…) [accept], I have nothing more to say. Also, the physician said, Why are you coming to me if you don’t agree with the treatment?. There should also be an alternative (…) they should tell me, okay, there is A and there is B. There should be more than one option but that does not exist’ .‘Multidisciplinary care under one roof and during the same visit was a highly important factor among individuals with diabetes. They indicated that not having this could be a treatment barrier.When it’s all under one roof and provided at the same time, it’s much more efficient (…) it’s easier. It’s not that today I’m going to a family physician or a diabetes physician and on Thursday I have to go to a dietitian’ .‘I think these measures [PROMs] are more important than some measures that we have today. I say this definitively, I would like to see more of these measures and less of the clinical measures’ . However, many of the sub-domains that were raised by the people with type 2 diabetes were not mentioned in the experts’ panels. Expert discussions revealed that health providers favour using PROMs in diabetes care and even acknowledged their necessity to improve the treatment process, particularly regarding sensitive issues such as mental state and sexual dysfunction. One of the experts summarized: ‘This study identified valuable aspects for people with type 2 diabetes that can be used as a basis for the development of PROMs in diabetes care. The analyses revealed four domains. First, several challenges that people with type 2 diabetes reported facing included decreased physical function, fatigue, hypoglycaemia, struggles with implementing a healthy lifestyle, sexual dysfunction, and financial burdens. Second, various negative emotions and mental health issues accompanied life with diabetes, including anxiety, distress, loneliness and depression. Third, self-management ability arose as a cornerstone of the treatment process which could be improved with guidance and support by healthcare providers. Fourth, the quality of the patient-clinician relationship was emphasized, including the importance of shared decision-making, and trust in their treating clinicians and prescribed antidiabetic medications. Our results suggest that PROMs based on perspectives of people with type 2 diabetes could address the gaps between patients’ perspectives and the healthcare providers’ perspectives, and promote patient-centered care.Our findings indicate that challenges of people with type 2 diabetes  interrupted their daily activities and lowered individuals’ general health. This is in line with previous studies , 29–31. Our study identified sexual dysfunction as a topic that is usually not discussed during medical appointments, and PROMs could be helpful in addressing this sensitive issue. Up to 85% of people with type 2 diabetes have some level of sexual dysfunction , which iAlthough Israeli citizens receive universal health coverage, the treatment of diabetes impose financial burden due to medication costs, gym fees and loss of work productivity. This is in agreement with a recent survey we analysed, where Israeli people with diabetes complained on the financial burden of medications . A previous study in Israel found that 10% of people with diabetes are non-adherent with medications due to cost . In the The results show that diabetes has a major effect on individuals’ mental health. Consistent with our results, previous studies have shown that diabetes is associated with a wide range of emotional conditions, including stress, anxiety, fear, frustration, loneliness, guilt and depression –40. The This study found that self-management ability is a valuable aspect for people with type 2 diabetes, and healthcare providers have a crucial role in enhancing people’s abilities to manage their diabetes by supplying information about the disease and its treatment. However, people with type 2 diabetes in this study and prior studies conducted in other countries , 42, 43 Our study showed that there are content gaps between perspectives of people with type 2 diabetes and those who treat them, which is one of the main contributions of this study. For example, topics such as the financial burden related to diabetes management , and the importance of shared decision-making were raised by people with type 2 diabetes but not by healthcare providers, and thus might be missed in provider-influenced PROMs. Notably, many tools were developed on the basis of the experts’ perspectives . In addiOur study had some limitations. First, data saturation had been reached with relatively small number (n = 19) of people with type 2 diabetes. Indeed, a recent review confirmed that qualitative study can reach saturation at relatively small sample size . The smaOur study also had some important strengths. First, it was based on the voices of people with type 2 diabetes. Various tools were used in the literature to assess PROMs in diabetes, but it is necessary to identify the needs and perspectives of people living with type 2 diabetes to choose appropriate tools from the existing validated tools and to add items if needed. Second, recruitment efforts were aimed toward participants with diverse characteristics, strengthening our study’s credibility . Third, In conclusion, this study has identified four domains that are valuable for people with type 2 diabetes in Israel. These domains could be relevant to other countries and we recommend that researchers and healthcare providers intending to utilize PROMs for routine diabetes care consider the aforementioned domains. There are content gaps between perspectives of people with type 2 diabetes and their healthcare providers. PROMs are essential for people with type 2 diabetes and healthcare providers in addressing issues largely not addressed in routine diabetes care and were missed in provider-influenced PROMs. This study representing an important first step in the future routine use of PROMs in Israel. In future research regarding incorporating PROMs into diabetes care, we plan to assess associations between socio-demographic variables and clinical quality measures using PROMs.S1 File(DOCX)Click here for additional data file.