Chronic coronary syndrome (CCS) is a potentially progressive clinical presentation of coronary artery disease (CAD). Clinical practice guidelines (CPGs) are available for prevention, diagnosis, and treatment. Embedded in the “ENLIGHT-KHK” healthcare project, a qualitative study was conducted to identify factors that influence guideline adherence from the perspective of general practitioners (GPs) and cardiologists (CA) in the ambulatory care sector in Germany.GPs and CAs were surveyed via telephone using an interview guide. The respondents were first asked about their individual approach to caring for patients with suspected CCS. Subsequently, the accordance of their approach with guideline recommendations was addressed. Finally, potential measures for assisting with guideline adherence were discussed. The semi-structured interviews were transcribed verbatim and analysed using a qualitative content analysis in accordance with Kuckartz and Rädiker. Factors influencing adherence to CPGs were categorised by assessing whether they (i) inhibited or facilitated guideline adherence, (ii) played a role in patients at risk of CCS or with suspected or known CCS, (iii) were mentioned in implicit or explicit thematic reference to CPGs, and (iv) were declared a practical problem.Based on interviews with ten GPs and five CAs, 35 potential influencing factors were identified. These emerged at four levels: patients, healthcare providers, CPGs, and the healthcare system. The most commonly cited barrier to guideline adherence among the respondents was structural aspects at the system level, including reachability of providers and services, waiting times, reimbursement through statutory health insurance (SHI) providers, and contract offers. There was a strong emphasis on interdependencies between factors acting at different levels. For instance, poor reachability of providers and services at the system level may result in inexpedience of guideline recommendations at the CPG level. Likewise, poor reachability of providers and services at the system level may be aggravated or alleviated by factors such as diagnostic preferences at the patient level or collaborations at the provider level.To assist with adherence to CPGs regarding CCS, promoting measures may be needed that account for interdependencies between barriers and facilitators at various healthcare levels. Respective measures should consider medically justified deviations from guideline recommendations in individual cases.German Clinical Trials Register: DRKS00015638; Universal Trial Number (UTN): U1111-1227-8055.The online version contains supplementary material available at 10.1186/s12913-023-09587-1. Coronary artery disease (CAD) at a global level has a high and, at times increasing, prevalence, incidence, and mortality , 2. CAD For Germany, there are two relevant guidelines that recommend a symptom and pre-test-based algorithmic diagnostic approach , 6: firsAmong several similarities, both CPGs recommend invasive coronary angiography (ICA) via cardiac catheterisation for diagnostic and treatment purposes in high-risk patients. However, according to both guidelines, in patients with intermediate pre-test probabilities, initial non-invasive ischemia testing (NIT) is considered mandatory. Stress echocardiography, coronary computed tomography angiography (CCTA), cardiac stress magnetic resonance imaging (CMRI), and myocardial perfusion scintigraphy (MPS) are all considered appropriate procedures. However, rates of ICA in Germany are continuously higher than those in other European countries, and there seems to be a significant correlation between regionally available ICA capacity and the use of said procedure, especially as a treatment for CCS . This maThe “ENLIGHT-KHK” healthcare project was set up to evaluate guideline adherence in patients with presumed CCS in Germany based on the NVL-CAD version from 2019 and the ESC-CCS from 2019  . BetweenThe reporting of the study is in accordance with COREQ . See AddFocusing on ambulatory care in Germany, the objective of the qualitative interview study was to explore factors that influence adherence to NVL-CAD and ESC-CCS in patients with suspected CCS. GPs (i.e. primary care providers) and CAs (i.e. secondary care providers) were targeted as respondents for the interviews. They were first asked about their individual approach to caring for patients with suspected CCS. Subsequently, the accordance of their approach with guideline recommendations was addressed. Finally, potential measures for assisting with guideline adherence were discussed.The following questions guided the research process:inhibit or facilitate guideline adherence (normative influence)?Which factors patients at risk of CCS or with suspected or known CCS ?Which factors are related to implicit or explicit thematic reference to CPGs regarding healthcare for CCS (thematic relevance)?Is a factor mentioned in practical problem within healthcare for CCS ?Is a factor perceived as a By answering these questions, the study could provide evidence on whether and to what extent measures are needed to promote adherence to CPGs regarding CCS.A recent meta-review documented that there is a large body of literature on factors influencing the implementation and uptake of CPGs . EvidencThe interviews were conducted in German and the study lasted twenty months. The study was divided into three main phases: recruitment, data collection, and data analysis see Fig. .A maximum sample size of fifteen to twenty respondents was planned due to the physicians’ time constraints . A finanIn accordance with Moser and Korstjens , the samSemi-structured interviewing was chosen as the mode for the data collection. This method allows for an exploratory collection of in-depth information on the perspectives of social actors, i.e. certain attitudes, beliefs, experiences, and/or perceptions. Furthermore, it ensures coverage of various topics that are important to a respective research aim thanks to the use of an interview guide , 26, 27.There was no established relationship between the interviewer and the respondents prior to the interview. The respondents were made aware of the procedures of the qualitative interview study and the wider project setting before the interview took place. The information provided in this context concerned aspects such as the aims of the study, the roles of the participating project partners, data management, and funding. Formal consent was obtained from the respondents prior to the interview. All the interviews were documented as audio recordings, which subsequently acted as the basis for verbatim transcription. Transcription began immediately after the interview, and was guided by rules provided by Dresing and Pehl . FinallyA qualitative content analytical approach was used for the data analysis. This allows for interpretation of personal meaning, i.e. reflection of the subjective perspectives of social individuals . Among vBased on Kuckartz’s model for an iterative thematic qualitative text analysis , the datpreparation) began simultaneously with the data collection. In this sub-phase, data-driven main categories were developed for potential influencing factors by means of cursory coding of the evolving data corpus. This mode allowed for the uncovering of modifications required to the initial interview guide (i.e. redundancies or needs for specification). Furthermore, four code variables were designed as a preparatory step (see Table The first sub-phase (execution), data-driven sub-categories of potential influencing factors were developed by means of sequential coding of the completed data corpus. Based on the respondents’ statements, potential influencing factors were identified, designated, and specified using the designed code variables. Each of the influencing factors was then allocated to a main category. In order to foster intersubjective comprehensibility as a central quality maxim  and then may also have linked the symptoms to other organs” .For instance, the ability of patients to handle health-related information was generally viewed as a facilitator for guideline-adherent clarification of CCS from both the perspective of GPs and CAs {1}. In concrete terms, if patients “many patients insist on seeing a CA in situations where I say: ‘actually, you don’t need to.’ But no, they do not let me talk them out of it and insist on it and so on, right? That is why CAs are so overrun: because everyone who has high blood pressure runs to a CA first. […] But primarily, a blood pressure adjustment, for example, is not a task for a CA. But you really cannot make a lot of people believe that, can you?” . On the other hand, preferences for diagnostic procedures were mentioned by both GPs and CAs. For example, the respondents noticed that patients may claim ICA for diagnostic confirmation. This would become apparent “especially in light of the frequent question: can the person be managed at home? Yes, of course they would prefer that the person has CCS, gets a stent, and then bounces around again like they did when they were forty. But of course, that is not always the explanation. Perhaps there is also a sum of aging processes that simply goes hand in hand with certain impairments, right?” . From the respondent’s perspective, the problem in these cases is, that “in the end, the patients are the ones who decide for themselves: where do they go with their chest pressure complaints? And because their aunt thinks it could be something for the CA, and it could be a heart attack. And their uncle is also/ And they used to/ And so on. Then you go directly to the CA – even believing that you are an urgent patient – and/ Yes, then all this misdirection starts” . However, where patients’ intentions fall in line with guideline recommendations, the respondents did, in fact, acknowledge potential for de-problematisation. In the end, “the question is always: what is the patient’s wish? Or: what is the patient’s order?” .In turn, the personal intentions of the patient were generally seen as a barrier to guideline-adherent clarification {6}, for example. On the one hand, this pertained to preferences for known and/or specialised physicians which were predominantly mentioned by GPs. For instance, In summary, factors at the patient level may be diametrically opposed to or in line with certain guideline recommendations: disease awareness in patients may fundamentally facilitate or inhibit guideline-adherent diagnostics. Furthermore, patients’ diagnostic preferences may steer functional differentiation between primary and secondary care as recommended by NVL-CAD and ESC-CCS. This also applies to the recommended use of NIT. For instance, a patient seeking diagnostic certainty may force mobilisation of ICA. In patients with intermediately presumed CCS, this would not correspond to the recommendations of the NVL-CAD and ESC-CCS. In this ambivalent sense, patient factors may aggravate or alleviate the influence of identified factors at other levels, particularly those at the system level .Factors at the provider level were recurrently coded throughout the interviews. The central argumentative logic stated by the respondents at this level is similar to that expressed at the patient level, i.e. while the respondents’ perspectives with regard to healthcare provider action and its consequences for guideline adherence varied, there was a focus on conditional aspects for said action. As Fig. “the patient must offer the prerequisites for it. So, it is different whether you examine someone who is athletic, wiry, and of normal weight, or whether you examine someone who is a heavy smoker with overinflated lungs, which then always push in front of the heart, or someone who is very overweight. Where you cannot even properly depict the heart with the ultrasound, right? And unfortunately, these patients who have this exact heart disease are often long-time smokers or very overweight. And to be honest, they often cannot be examined well using stress echocardiography, right? Although the procedure is very good, it has its limitations” . Referring to CMRI was likewise viewed as difficult, since patients may “be claustrophobic or simply overweight” . However, the respondents also noted that, if patients meet the respective criteria for NIT procedures, this has a facilitating influence on guideline adherence. In the end, “the patient must provide the conditions” .As an example, especially CAs emphasised that, due to each patient’s individual mental and/or physical condition, it may not be possible to use certain diagnostic methods {8}. This may pose a barrier to guideline-adherent clarification. This was especially viewed as a difficulty with regard to stress echocardiography, since “you just need trained personnel. In other words, a CA with additional CMRI training or […] a radiologist with additional cardiological training who can also operate such equipment” . By this logic, the (anticipated) extent of professional expertise may influence whether certain procedures would present as valid options for NIT: “I used to live in a large city where MPS and stress echocardiography were also available. Here, in this medium-sized city, they are […] available with less expertise, right?” . However, the respondents also cross-professionally emphasised that latent personal experience can serve as a motivator for diagnostic decisions, too {17}: “the medical profession is not only evidence and not only scores and not only CPGs but, basically, also experience, intuition, which cannot be measured” . Or “something like a gut feeling. An assessment on my part: Do I have the impression that this is very likely CAD in need of intervention?” . As a result, healthcare providers may be more guided by their experience than by evidence. This was indicated with regard to the calculation of pre-test probabilities, for example: “so, I do not look at the tables now, I have to say, right? But I really do it more according to other criteria and then go according to my experience, according to my feeling, in which direction it goes. […] For me personally, I do not look at the numbers and see from a score of so-and-so percent: then I will go down the path to ICA, right? And I think that is what many of my colleagues do. That it is more of an aid, but not a fixed ritual that you have to follow” .Another example of this ambivalence became apparent when considering healthcare provider knowledge as a potential influencing factor. The respondents stressed that said knowledge plays a role in guideline-adherent diagnostic and therapeutic decision-making. However, they were generally reluctant to specify in detail how it may influence the guideline adherence of the respective decision. This may be because the respondents were referring to a conglomerate of forms of personal knowledge. In accordance with Polanyi , two subIn summary, factors at the provider level may also be diametrically opposed to or in line with guideline recommendations. This may manifest in providers  using aids such as the calculation of pre-test probabilities. Likewise, providers may  initiate NIT prior to ICA in patients with intermediately presumed CCS. Due to the ambivalent nature of these viewpoints, provider factors may also aggravate or alleviate influencing factors at other levels. Once again, this may apply in particular to influencing factors at the system level  and “what kind of relationship you subjectively built up” . This gap was seen as particularly prevalent when it came to the individuality of patient cases: “CPGs are very popular and are also on the rise. But CPGs are also somehow, sometimes woodcut-like if they are applied too narrowly. […] They are used to try to establish rules for action, but the physician-patient reality is often different – not woodcut-like, but much more varied. […] Individual cases are very, very individual. The symptoms are also very individual in terms of their severity” . This may be one reason for formally regarding the application of CPGs as not always mandatory as one GP emphasised {24}. According to the German Medical Association, for example, CPGs “are to be understood as corridors for action and decision-making from which deviations may or even must be made in justified cases. The applicability of a CPG or individual guideline recommendations must be examined for each individual situation according to the principle of indication, consultation, preference determination, and participatory decision-making” . I cannot just do that/ I cannot just make an outpatient referral.” .As a result, these formal barriers shape certain content-related barriers at the CPG level. For example, the respondents cross-professionally stressed that CPG content was developed for the sake of formal generalisation but was still characterised by ambiguity {27}. They illustrated this using the example of calculations of pre-test probabilities, which they said included a In summary, these formal and content-related barriers regarding the development and application of CPGs may foster (un)intended deviation from certain recommendations provided through NVL-CAD and ESC-CCS. This may relate to informative aids such as the calculation of pre-test probabilities, but also diagnostic recommendations such as NIT prior to ICA in patients with intermediately presumed CCS. However, the perception of formal and content-related barriers at the CPG level may depend to a large extent on factors at the patient level . As such, GPs perceived waiting times for CA appointments as being too long {35}. Here, “poor coordination occurs: everyone with thoracic pain shows up at the CA office, without any pre-screening or pre-selection having taken place already” . While CAs considered cardiological practices as “easily accessible and available to patients at every turn” , the problem of long waiting times was indeed confirmed in CA view: “The waiting times are more the problem with us, I think. As CAs in ambulatory care. […] And we actually have six months waiting time for routine things. If the GPs want it to go faster, we try. But I think we are often the eye of the needle.” . As part of standard care, facultative health check-ups were mentioned as an example of a tool that could potentially help overcome this lack of coordination {34}. However, for many patients, these would be only available “every third year now, right? […] But we are talking about CCS in particular now, right? And I think that more should be done on an outpatient basis” . In light of this, selective contracts were cross-professionally perceived as having limited potential as an instrument that could compensate for deficiencies in standard care {34}. They “involve a certain amount of bureaucracy, which you always shy away from because you don’t have enough time anyway” . Despite this, the respondents emphasised that selective contracts may not improve healthcare by sustainable means: “isolated contracts are made here and there. But that is not the big picture that we need. The big thing is the actual establishment of a primary physician system and the strengthening of the primary physician system” . In the end, there are “many [selective contracts]. It would just be a matter of putting it all together. Then we would probably be dimensions ahead already.” .Poor reachability of CAs was mentioned from a local perspective by GPs {33}, for example: “widely available”  {33}, which may have an impact on waiting times {35}: “and, unfortunately, until we have free appointments for a stress echocardiography at the moment – especially if we have to do it with medicinal stress […] –/ Then I prefer to send them to CMRI or MPS because that is faster” . However, access to alternative procedures for NIT may not always be more sufficient. CCTA “is still not even widespread” , CMRI “is not even offered in every normal radiology department” , and MPS “is hardly ever offered by nuclear medicine specialists”  {33}. In addition to this, NIT procedures were characterised as diagnostics with a relatively high workload in terms of attention, training, cost, and/or time, especially from a CA view {30}. As such, one could “put it this way: I am certainly more likely to be able to catheterise the patient in less time than it takes me to get imaging. Now, that is true for most areas of imaging. For CMRI and CCTA”  {35}. As this quote illustrates, access to ICA was often described as more widespread and/or faster than NIT by GPs and CAs {33,35}: “ICA is available everywhere. And it can be done quickly because it has been established for years. I think that is certainly one reason why ICA is done more quickly in hospitals. Because they have the catheter table, but they do not have CMRI and MPS. And then to send the patient home first, to lay it on the GP or to tell them to go to the CA, then they do not get an appointment for those of us in outpatient care. And that is all/ Yes, unpleasant for the patient. And then it is better to just do ICA quickly. Then you have dealt with it […] I think.” . However, this may lead to “a lot of unnecessary invasive diagnostics.” . From the GPs’ and CAs’ point of view, this combination of a lack of incentives for NIT and disincentives for ICA may also be made worse by economic factors {32}. For example, a lack of SHI reimbursement for NIT conducted using CCTA and CMRI was emphasised as a deficient structure: “the problem with CMRI and CCTA is that both of these things are actually only offered through hospitals and are inadequately represented in outpatient care – and billing” . Furthermore, SHI reimbursement for outpatient stress echocardiography was perceived as inadequate. It would be “poorly paid, right? And as it is always in medicine: everything that is poorly paid is also poorly done, because of course every physician’s practice is also an economic enterprise to some extent, right? […] And that is why, for example, certain procedures in conservative medicine that are very desirable are simply carried out too rarely because of their poor reimbursement, right?” . In turn, financial disincentives were attributed to ICA: one could say that “too many unnecessary ICAs are being ordered because: these are patients who/ That is right. Now you could say: yes, because the DRGs show that better or show it better than the CPG says” .Furthermore, both GPs and CAs stressed a lack of sufficient structure regarding NIT. Stress echocardiography, for example, may not be In summary, these intertwined structures and processes may have two major consequences for guideline adherence. Firstly, they may impede the functional differentiation between primary and secondary care as recommended by NVL-CAD and ESC-CCS. Secondly, they may indicate a potential need to occasionally perform purely diagnostic ICAs without prior NIT, regardless of pre-test probability. In patients with intermediately presumed CCS, this would not correspond to the recommendations of the NVL-CAD and ESC-CCS. However, handling of structural and processual barriers may also depend on factors at the patient and provider levels adherence. Furthermore, our study could serve as a starting point for the consideration and potential development of measures aimed at optimising guideline adherence. However, the findings still need to be viewed in consideration of the study’s limitations and strengths. These are linked to the epistemological interest, empirical scope, and analytical approach of the study , and become apparent when reflecting on its implications for research and practice .Regarding the investigation of implementation and uptake of innovations in healthcare practice (e.g. CPGs), Wensing and Grol noted that “most studies report on perceptions of the determinants […]. Research evidence on the actual impact of specific determinants is limited” . HoweverImpact-related questions could be answered using studies that analyse the form and extent of (non-) adherence to relevant CPGs. Hereto, analyses conducted in the course of the observational study within ENLIGHT-KHK reveal that, in Germany, patients with intermediately presumed CCS often undergo ICA without first undergoing the recommended NIT  , 42. As However, non-adherence to recommendations provided through guidelines such as NVL-CAD and ESC-CCS can only be assessed to a limited extent: an upstream assumption of the study is that applying quality-assured CPGs  holds the potential to encourage patient-centred and resource-efficient healthcare. This evidence-based understanding of good clinical practice is confronted with a fundamental operationalisation problem regarding guideline adherence as a construct, since there is no standardised approach that allows a reliable assessment of adherence to a respective CPGs  . AlthougThe respondents’ perceptions are related to their personal characteristics. There are a number of circumstances in which a provider may be more likely to place emphasis on deficiencies in healthcare structures as a barrier to guideline adherence {32–35}, e.g.:If the provider needs to arrange referrals within these structures (i.e. profession as a characteristic).If the provider’s practice is in a rural or small-town region (i.e. location as a characteristic).If the provider’s practice does not collaborate with other healthcare providers (i.e. cooperation as a characteristic).In order to reflect a broad spectrum of perspectives, the study sample was compiled with a view to variation in profession, practice location, and cooperation. However, due to pragmatic recruitment hurdles regional bottlenecks with regard to NIT {33} may be aggravated or alleviated by patients’ diagnostic preferences {6} or intra-sectoral and inter-sectoral collaborations {12}. Such interdependencies can occur between influencing factors with different coding frequencies. For instance, only one respondent stressed the ability of patients to travel to healthcare facilities independently as a potential influencing factor {2}, but this may have a crucial influence in terms of ICA in patients with highly presumed CCS: even if collaborative care were ensured {12} and waiting times were appropriate {35} (i.e. two influencing factors that were stressed rather frequently by the respondents), independent travel could prove a deciding factor for the implementation of ICA if the healthcare facilities in question are located too far away from the patient’s home {33}.As these examples of factorial interdependencies illustrate, an appraisal of major and minor subjects may be biased if it is based solely on coding frequencies. In order to avoid unilateral presentation of frequently coded factors as major subjects, a frequency-based appraisal of code variable values and coding relations was thus integrated as a corrective. This allowed us to compile a profound analysis of the interdependencies between influencing factors. However, in some cases, the code variable values were only marginally dominant, and depictions of coding relations ultimately depend on coding-frequencies. As such, frequency-based appraisals in the course of qualitative analyses serve merely an interpretative crutch for sorting through a complex, ambivalent data corpus, i.e. achieving representativeness through statistical means is not the aim .According to Nilsen , there aA theoretical synthesis by Cochrane et al. designed to “expand our understanding of how multiple factors pose barriers to clinical practice” .An interdisciplinary conceptual framework by Gurses et al. that aims to show “interrelationships among […] major categories of factors […] that influence guideline compliance” .A heuristic differentiation by Grol et al. that “aims to provide an impression of the range of factors that may be relevant” .Also of note is meta-review by Correa et al., which aims to “explore barriers and facilitators for the implementation of CPGs in different clinical areas of health” . This isOverall, the findings of our study are in line with these frameworks. However, our findings are contradicted by Gurses et al. , who ideOur findings indicate that GPs and CAs endorse the relevance of adherence to CPGs when caring for patients with suspected CCS but also emphasise the need for maintaining the physicians’ scope: in coherence with the conception provided by the German Association of the Scientific Medical Societies, CPGs were viewed as “possible corridors for action and decision-making” from which deviations may or even should be made in justified cases . This imFor example, it may be possible to alleviate mismatched financial incentivisation of NIT and ICA {32}, a structural barrier to guideline adherence, by revising the SHI reimbursement scheme. This system-level intervention could reduce the number of profitability-based decisions for ICA without prior NIT in patients with intermediately presumed CCS on behalf of healthcare providers {20}. Consequently, recommendations for the use of NIT and ICA in NVL-CAD and ESC-CCS may likewise appear more expedient {23}. However, such a revision of the SHI reimbursement scheme could also result in an unintended financial incentivisation of NIT in patients with low pre-test probabilities {20, 32}.As a further structural barrier to guideline adherence, the low density of cardiology practices in certain supply regions {33} could be overcome by implementing revisions in demand planning for ambulatory care. If access were to be improved, it could defuse long waiting times for CA appointments {35}. In the long run, this could promote a differentiation between primary and secondary care as recommended in NVL-CAD and ESC-CCS, thus making it seem more expedient {23}. However, the de facto implementation of this functional differentiation may also depend on patients’ preferences in terms of physicians {6}. If patients were to continue to primarily visit CAs when seeking initial clarification, revised demand planning would not have the intended impact.The applicability of the findings of our study should be investigated within a broader healthcare context, e.g. by conducting a supplementary statistical survey. Moreover, a deeper and more analytical understanding of the interdependencies between factors that influence guideline adherence should be aspired to; this could be achieved by carrying out additional qualitative interviews, for example. These two approaches may help us to further understand whether and to what extent measures are needed to promote adherence to NVL-CAD and ESC-CCS.Prima facie, eliminating barriers at the system level may aid with adherence to CPGs with regard to CCS. However, factors at the patient, provider, and CPG levels may foster or impede this process. As such, a set of strategically coordinated measures may be required in order to promote guideline adherence. These measures should take account of the interdependencies between a multitude of barriers and facilitators. However, it should be taken into consideration that, in healthcare practice, guideline recommendations may be deviated from in medically justified cases. The findings of this study provide a starting point for reflecting the necessity and potential form of respective measures.Below is the link to the electronic supplementary material.Supplementary Material 1Supplementary Material 2Supplementary Material 3Supplementary Material 4Supplementary Material 5Supplementary Material 6


Multimorbidity has become an increasingly prominent lens through which public health focuses on the ‘burden’ of ill health in ageing populations, with the promise of a more upstream and holistic approach. We use a situational analysis  in south London, UK, to explore what this lens brings into focus, and what it obscures. Local initiatives mobilised the concept of multimorbidity in initiatives for integrating health care systems and for commissioning for prevention as well as care. However, as the latest of a series of historical attempts to address system fragmentation, these initiatives generated more complexity, and a system orientated to constant transformation, rather than repair or restoration. Service providers and patients continued to struggle to navigate the system. Dominant policy and practice narratives framed patient self-management as the primary route for addressing individualised risk factors on a trajectory to multimorbidity, whereas the narratives of those living with multiple conditions were more oriented to a relational model of health. The findings suggest possibilities and limitations for leveraging the concept of multimorbidity for public health. In this field, the promise arose from its potential to make spaces for a focus on populations, not patients with discrete diseases. Realising this promise, however, was limited by the inherent tensions of biomedical nosologies, which separate discrete diseases within individual bodies, and from epidemiological approaches that reify the socio-material contexts of failing health as risks for individuals. Multimorbidity has come to the fore in recent years as a way of framing the public health implications of the growing burden of population ill health , came the possibility of one patient being ill with multiple diseases, which might afflict different organs or systems of the body and/or the mind. For biomedicine, these multiple diseases were typically termed ‘comorbidities’. This term has increasingly been replaced with ‘multimorbidities’ to reflect the lack of primacy of any one disease  GP  practices providing primary care, two trusts providing in-patient hospital services, and a large number of other NHS health providers.To explore what the concept of multimorbidity was doing in this field, we drew on the techniques of situational analysis Clarke, . SituatiWe drew on a range of data sources, including: 42 documents related to local health policy and practice; eight formal interviews with local health policy or practice key informants ; informal interviews and observations  and 18 interviews with people  living with multimorbidity in the two boroughs. The term ‘multimorbidity’ is in increasing used in research and policy fields, but not necessarily in practice, so was not used explicitly in recruitment material. People who identified as ‘living with more than one long-term illness’ were recruited through leaflets displayed in a large community building where many charities and resource centres for those with long-term conditions were based, through a community newsletter, and through local peer-support networks for people with chronic diseases. The information sheet for key informants stated that the aim of the study was to map ‘services and support available to people living with long-term illness’ in order to ‘inform a larger study on multi-morbidity’. The topic guide began with an invitation to describe their own role, with follow-up questions using the terminology they used, and later questions prompting specifically on ‘multimorbidity’, if this was not a term already used by the interviewee. Interviews lasted between 45 minutes to over three hours and were, with consent, audio recorded and transcribed for coding and thematic analysis. In all fieldnotes, vignettes, and quotes, pseudonyms are used. Extracts are tagged with gender , and age for people living with multimorbidity, and KI (Key informant) number for policy and practice stakeholders .Analysis was primarily qualitative, using techniques of grounded theory  but orientated towards our aim of understanding what work the concept of multimorbidity was doing in this locality. This included a series of mapping exercises in which the actors, discourses and positions were listed  and graphically linked to each other  to help reveal (for instance) what is core, what is missing, what positions are taken in the field. NVivo was used for quantitative documentary analysis (word co-occurrences). Ethics approval was granted by King’s College London .A large number of actors – organisations, partnerships and initiatives – were identified, from the documentary analysis and interviews, as related to the management of multimorbidity in this field . The organisations operated at various levels, from international and national , regional (London-wide providers), to borough and local providers. They ranged in scope from specialist service-based organisations  to large NHS trusts. They also ranged in organisational types, from voluntary organisations or social enterprises supporting people with one or more conditions (including faith-based organisations), to large statutory sector organisations. There was also a plethora of partnerships, alliances and cross-organisational bodies that linked these organisations. An immediately obvious characteristic of this field is that it is crowded. It was also widely described, by those within it – whether service users, clinical leads, commissioners or front-line practitioners – as ‘complex’. Understanding how organisational actors related to each other was not straightforward, as they are neither necessarily discrete, nor hierarchically organised . This is perhaps a typical late modern organisational field, with blurry boundaries around organisations, overlapping remits, multiple partnerships, and complex lines of accountability.… sometimes it doesn’t agree [between different systems] … this happened this year. … I went there [hospital] three times … [they said] I’m not in the system. I said I am in the system, I never changed, I should be there. When I attended there I’m not booked … You see me, I’m struggling. … my care coordinator, she left, again, this was the third time without, they don’t even bother to tell you when they’re leaving People living with multimorbidity typically described this health care system as difficult and often frustrating to navigate, evidenced in challenges such as cancelled appointments, missing notes and rapid turnover of staff and services:People with multiple long-term conditions often have an incredible hospital appointment burden, so will be seeing multiple specialists, often who don’t particularly talk to each other (KI1)Service providers recognised these challenges for people with multiple conditions, and the limitations in integration across the separate services they may be accessing:I think another problem is communication between services, you know […] Because I’m sure there might be more people specialised in housing advice but if the [connection service] doesn’t know it […] there are organisations as well, smaller ones that we are not using because we don’t know them (KI3)As one charity lead noted, health-oriented patient and voluntary associations are also typically organised around disease categories, even though ‘it is rare now to speak with anyone with only one condition’ (KI8). Even those with expertise and specialised knowledge of the field recognised that a comprehensive mapping of the organisations involved in service provision relevant to people with multimorbidity might not be possible. One manager of a service which aimed to provide navigation through services for clients with multiple health care needs suggested:The complexity of the local field is not, perhaps, surprising: people living with multiple conditions have multiple needs that cross healthcare specialisms and social services. Addressing the fragmentation of care was hardly a new challenge, and there had been, locally, a number of initiatives to better ‘integrate’ the system for patients whose needs might span a number of service providers. Multimorbidity might be the latest focus for thinking through system complexity, but it had not, in itself, revealed the problem.with complex needs, there’s an agreed criteria on those with three or more long-term conditions and frailty (KI4)[I]n a sense there’s a distinction here between … a group of people who have multiple long-term conditions, be they, you know, diabetes, kidney impairment, maybe they had a stroke, whatever, who are relatively … non-frail and then there’s a group of people who are frail who have multiple long-term conditions … from a medical point of view the care they need is quite different (KI1)Key informants drew on a number of related constructions of patients for whom system fragmentation might be a challenge, with ‘complex needs’ and ‘frailty’ often referenced. The overlaps between these concepts and multimorbidity were, at times, explicitly noted as confusing, and of course the most relevant framing might depend on the purpose:It’s forced a lot more joint working programmes … and multidisciplinary working, and working with the voluntary sector … I think the multimorbidity work has gone along that route, with that general strategic difference [of] integration across different levels of health sector, across different sectors [KI2]Asked what focusing on multimorbidity, specifically, had changed, one commissioning lead discussed practical initiatives , but more strategically suggested the key change was a renewed impetus to commission services across sectors, as well as across different parts of the health care system:(The) main Health and Wellbeing Alliance, whatever they’re going to call it, is very much that concept of early disease and within an area having opportunities for that person to stay well. (KI1)For this interviewee, multimorbidity had opened up both a more holistic approach, drawing in neighbourhood voluntary organisations, and potentially more ‘upstream’ work, by bringing in partners in local authorities responsible for prevention and wellbeing initiatives. Other participants echoed this possibility for a more preventative, upstream approach as being a change from previous iterations of partnership working. If a focus on ‘frail’ or ‘complex’ patients had suggested a primary orientation to clinical needs, then ‘multimorbidity’ implied an orientation to all those living with multiple conditions, not just patients. Emergent partnerships would, therefore, involve commissioning across local authority as well as health and voluntary sectors, and focus on prevention as well as disease management:So there were three Local Care Networks in Lambeth and two in Southwark […] there were two parts to the Local Care Network […] a Local Care Network Board which brought together a variety of people from Primary, Secondary, Community Care and Social Care […] and then we had what we call the Local Care Network Forum which was really meant to be more patient facing, patient centred […]I suppose the big thing that came out of Local Care Networks in Lambeth was really a follow-on […] the Southwark and Lambeth Integrated Care Project (KI1)However, key informants also described a number of historical partnership initiatives and other strategic policies that had also been orientated to these kinds of cross-sector integration of services. What was striking was not only the rapidly proliferating number of organisational forms and varied initiatives that were currently aiming to deliver, commission or steer services for people now identified as having multiple morbidities, but also the large number of references to historical initiatives around partnership working for more holistic care for those who had previously been identified as having multiple or complex conditions. These extracts from one interview indicates this sense of both prior – and endlessly continuing – transformation of local organisational relationships. The interviewee references ‘Care Networks’, which had aimed at integrating services for clients identified as having ‘complex needs’; networks which ‘no longer exist’:So, the Local Care Networks were stood down once the PCN [primary care network] agenda came through, so the primary care and the community, or unit of function, is really the PCN, because obviously that’s the unit that’s nationally being driven. So, as the PCN Clinical Directors have come into place, we’re working at that, at that locality and that level … the LCN [local care network] footprint has really gone … so we’re sort of thinking that sort of the MDT [multi-disciplinary team] will be at a PCN level, whatever that looks like (KI4)These extracts suggest the relatively short time scales of many initiatives and partnerships to date, and the sense of a local system in constant flux. The Southwark & Lambeth Integrated Care partnership mentioned at the end of the extract above, for instance, reported in and operated until 2016 (only three years before our fieldwork), but some interviewees had not heard of it, and the report was no longer easily accessible. Partnerships were, it seems, always in the process of either emerging or dissolving:This permanent state of transformation was an ever-present challenge for those commissioning and delivering services within the system. One commissioning lead provided a detailed account of how orienting commissioning around multimorbidity would now entail an ‘alliance’ approach, commissioning across sectors. They also referenced several recent national health services policies that this commissioning work would have to align with as it emerged; summarising by exclaiming: ‘Oh, it’s insane! It’s insane, the pace of change’ (KI2).[Pause] I can’t recall any conversations specifically where we discussed that, which sounds a bit mad, and I’m sure they’re talking about it now (KI1)Well actually, there weren’t massive conversations about that. I think there would have been This constant churn in initiatives, partnership structures, and staff in posts meant that recounting the history of organisational structures could be difficult, even for insiders, and recollecting past rationales, even more so. One interviewee, for instance, when asked about the development of one particular partnership, struggled to remember at which point discussions around how services fit together might have happened:For patients that’s very, very frustrating because they don’t perhaps understand the reasons why services don’t work better together. So a lot of this I think is about breaking down boundaries … (KI1)The challenges people with multiple conditions faced in navigating a health care system designed around single morbidities were, then, widely recognised by professionals, and typically framed as a problem arising from ‘fragmented healthcare’. The solution was to (re)imagine pathways into the alternative: an integrated, holistic service provision.and a continuing brake on improvement. Achieving integrated care therefore required ‘a massive shift in approach’ (KI8) to achieve a healthcare system geared to holistic and patient-centred care:Acute and community health, it’s very siloed […] are you really providing them with a nurse for a truly holistic you know, wide-angled review […]? I think that that is the challenge with these complex patients, is how do we get everybody in that space to have that wide-angle lens? (KI4)There was broad agreement across all key informants that boundaries between specialities and community and hospital sectors were major barriers for patients, with the metaphors of ‘breaking boundaries’ and ‘silos’ ubiquitous. ‘Silos’ were framed as both the root of the problem [the goal is] putting the person in the centre of all the decision making […] and on the opposite side of that and what’s stopping that is the disease guidelines. And you know particularly when you’ve got some with multiple morbidity, there can be 8 or 9 or 10 different disease guidelines that apply to them. (KI2)Traditional service provisions did not just act as a barrier through contract specifications for services, which pushed patients into speciality-focused disease care. They also undermined holistic care through technologies such as clinical guidelines, which were also disease-specific. Achieving patient-centred care for people with multimorbidity was therefore potentially in tension with clinical good practice as currently framed:This focus on the technologies of healthcare based on single diagnostic categories  as the cause of problems discursively positions fragmentation as an outcome of biomedical boundaries, not of the transformation itself. The challenges patients (and providers) face in the present are, then, firmly linked to the continued biomedical power of speciality ‘silos’ and traditional service boundaries, not to an emergent organisational field in constant flux. Whilst changing healthcare systems is undoubtedly a long-term and messy process, the rhetorical linking of the current challenge (fragmented care) to traditional barriers, rather than to current system complexity, did function as a rationale for continued  ‘transformation’.I suppose the world moved on a bit, where you’ve got the social prescribers and link workers sort of working to support patients you know, with the voluntary sector and sort of working with you know, the community at large. (KI4)A missing discourse, across the documents and from key stakeholders’ accounts, was that of system repair, or the restoration of what had been ‘lost’ as a result of greater specialisation. Roles which might once have provided an integrated, patient-focused service  were not evoked as models to return to, for instance. In our dataset, there were no nostalgic discourses of return. Overarching narratives were focused firmly on the disadvantages of ‘traditional’ health care  and on moving forward through transformation, rather than return or repair. Rather than calls for redressing the losses of disappearing generalist roles such as that of the GP or geriatrician, initiatives focused on either developing new roles that could ‘navigate’ a complex system on behalf of patients or their advocates, or initiatives which integrated specialties and care provision at the system level through alliances and partnerships. The few references to past strengths of the system were couched explicitly as belonging to a different world:Multimorbidity was the latest lens through which the challenges faced by patients in navigating a health care system designed for diseases, not illness were made visible. Key informants suggested multimorbidity was different from previous framings of this challenge in its promise for a more holistic provision of services, across medical specialties and non-health care sectors. Multimorbidity was tightly framed as a problem of traditional speciality organisation (‘silos’); solutions were, discursively, therefore inevitably transformative, rather than restorative. However, the necessity for constant transformation across a health field still organised across specialities resulted in an ever-changing terrain of emergent and shifting partnerships, networks and initiatives in constant flux.If the challenges patients face in accessing healthcare were linked discursively to the enduring limitations of biomedical categorisations, challenges in managing lives with multimorbidity were largely located as problems of individual bodies. In the content analysis of documents, we identified narratives that were centrally linked (in that they were frequently cited in relation to multimorbidity), including recurring themes: of ‘risks’  or ‘risk factors’ (112 mentions) for multimorbidity; the idea of a patient ‘journey’ (mentioned 36 times across nine documents) through multimorbidity; and self-management. ‘Self-management’ was a widely referenced discourse through the documents, mentioned 24 times across eight documents, alongside ‘self-care’, used seven times in two documents.Risk factors were primarily framed in professional discourses as sites of concern for their place on potential pathways or trajectories (‘gateway conditions’) to multimorbidity. The multiply-morbid body is framed as being on a single trajectory, sometimes a ‘journey’, through which the body declines over time, as further chronic illnesses are added Relationality was salient in a number of respects in accounts of lived experience. First, it meant that the possibilities for maintaining health and wellbeing were deeply rooted in the social fabric. Relations with partners, families and friends (or their absences) were part of what made the ebb and flow of symptoms troublesome or manageable. This was particularly evident in accounts from those with caring responsibilities for others as well as their own chronic conditions to manage. Here, the interdependence of bodies disrupted the notion of the trajectory of multimorbidity relating to a single body:I think I can manage it okay, yeah. I always carry the inhaler with me and I can’t do anything about the traffic unfortunately but, yeah, that’s the way I manage it I’ve known from 50 years working in construction my joints are shot .A second aspect of relationality was the ways in which, in lived experience accounts, morbidities  were located in the relations of bodies within environments. Local environments , working conditions, and financial resources, all shaped what it meant to have asthma, or arthritis, or mental health problems.But to be honest most of the clients’ needs are most the same, like it’s always about housing, it’s always about employment, it’s always about activities or counselling (KI3)Front line providers also flagged the ways in which the health needs of those identified as having ‘multiple morbidities’ were located within these broader contexts. This lead for a service which signposted clients with ‘complex’ needs, noted:The recent welfare reforms, austerity measures and the economic downturn have affected disadvantaged communities the most. Making more affordable housing available and strengthening financial resilience are therefore priority actions to stop health inequalities from increasing further. In contrast, these relational aspects of disease as rooted in social structures were relatively muted across policy documents and stakeholder interviews. Whilst key informants did note the possibilities that multimorbidity brought for commissioning across sectors, and addressing wellbeing for a healthy population as well as patients, as discussed above, these possibilities were not yet elaborated, and structural conditions were absent as an explicit driver of multimorbidity itself. Some policy documents did highlight structural conditions and the broader public sector context in this setting – an area of London characterised by stark wealth inequalities:However, neither this backdrop of austerity nor the impact of structural inequality were articulated in direct connection with the problem of multimorbidity across key informant interviews or the policy documents. Austerity was the economic setting against which action had to be taken, or (on occasion) a potential lever for improvement – a ‘drive to work more efficiently’ (KI8) or more creatively. However, austerity was not framed as a problem that might contribute to the burden of multimorbidity for patients. In summary, inequalities in the distribution of multimorbidity were widely referred to; inequalities as possible causes of ill health were not.In one setting, in south London, the relatively new concept of multimorbidity was a lens through which research, policy initiatives and service reorientations were being (re)focused. We undertook a situational analysis to explore what multimorbidity was doing, and with what implications for public health. We identified a field in a constant process of ‘transformation’. This was not new – a number of historical initiatives to address fragmented health care for patients variously described as being ‘frail’ or having ‘complex’ needs were described. Multimorbidity was, to an extent, simply the latest framing for service transformation to address the well-recognised challenges for particular groups of patients. However, the lens of multimorbidity was also described as offering novel promises. These were to a) reintegrate care towards whole persons, through integrating health services, and b) make possible a more ‘upstream’ approach by extending partnerships beyond health services. Addressing ‘multimorbidity’, specificially, provided a rational for system transformations that were explicitly premised on a critique of traditional biomedical nosologies, and the technologies and health care structures that arise from them. These had created ‘silos’, overly focused on the health needs of biomedical patients; multimorbidity would instead address whole persons. Discursively, positioning these silos as the primary driver of current problems undercut any possibility of system repair or restoration as a solution. In other settings, discourses of modernisation have been noted as co-existing with nostalgic discourses . Although people living with multiple conditions identified structural factors , and service providers recognised the social determinants of health, the overwhelming emphasis of policy remained on individuals and lifestyles – reflecting the ‘lifestyle drift’ that has been widely documented elsewhere  a ‘flattened’ version of ill health, in which diseases are added to each other, within a singular illness trajectory. This ‘flattening’ within one expansive illness category fails to address the well-documented experiences of living with multiple conditions, with their multiple trajectories of severity, importance, impact and concern. It also fails to incorporate the relational causes and consequences of multimorbidity. In focusing on quantity, through an additive approach to creating a new category of biomedical patient, multimorbidity remains inevitably situated as a property of bounded individual bodies, separate from their environment. Rather than seeing the multiply morbid body as a separate entity, the accounts of those living with multimorbidity evoke the relationality of bodies, conditions and environments in an interconnected, ongoing way. This opens up the body, not only as a category, but also in relation to change and the differing possibilities for intervention this may hold. Both categories of disease and the body are framed within the biomedical category of multimorbidity in ways that make it more difficult to see how structural aspects of health inequalities may contribute to living with, and developing multimorbidity. Ageing, deprivation, and marginalization are rendered as ‘risk factors’ that have the potential to impact individual bodies in which multimorbidity is ‘contained’, rather than properties of relational populations.The relatively novel concept of multimorbidity is generating enthusiasm and focus as a helpful approach to addressing the problem of the growing and unequally distributed social and economic 'burden' of ill health', as well as the problems of health care fragmentation which were the major focus for key informants in this study. In one setting, we have identified how policy and practice actors leveraged the concept of multimorbidity as having the potential to reinvigorate holistic and upstream approaches to health and wellbeing in their locality. However, we suggest that multimorbidity, drawing on the logic of existing biomedical classification systems, inevitably replicates and reinforces the same problems with understanding and incorporating social and structural determinants of health. In this field, this was reflected in the challenges of addressing fragmented care through ever changing alliances and partnerships between organisations; and the need for constant transformation. In a biomedical system still founded on disease categories, these changes merely compounded complexity, rather than integrating an (inevitably) divided system. Our findings suggest that it is a different framing of disease and the body, rather than a new category, which is needed to push forward public health approaches to the challenges of chronic illness within populations.Click here for additional data file.


Understanding what promotes or hinders a community’s capacity to serve the priorities of its residents is essential for the alignment of citizen needs and governance. Participatory approaches that engage community residents on the topic of community wellbeing are useful methods for defining outcomes that reflect a community’s goals and priorities. Using qualitative focus group methods, the aim of this study was to outline bottom-up definitions of community wellbeing from a diverse pool of community residents in Ontario, Canada.Semi-structured, two-hour group interviews were conducted with adult (≥18 years) participants (N = 15) residing in four communities across Canada’s largest province of Ontario. Participants were purposively selected from a pool of screening questionnaires to ensure diverse group compositions based on race, gender, age, and educational attainment. Interviews were thematically analysed using descriptive and interpretive methods to characterize resident conceptions of community wellbeing.Focus group participants were between 18 and 75 years of age and most had lived in their local community for 5 or more years. Four major themes emerged: (1) a sense of community belonging is cultivated through shared spaces, routines, support, and identities; (2) a community constitutes the amenities and social contexts that enable residents to thrive; (3) effective regional decision-making must be community-informed; and (4) the wellbeing of a community relies on equal opportunities for engagement and participation.Residents described their communities and their associated wellbeing as a combination of accessible amenities and opportunities to engage without marginalization. This study underscores the value of participatory approaches in community wellbeing research, where the viewpoint and life experience of residents is used to inform local decision-making and service delivery. Future research will capture more diverse perspectives towards community belonging, particularly from community newcomers, for the development of regionally appropriate indicators of community wellbeing. In recent years, there has been a growing recognition that the state of one’s community plays an important role in promoting wellbeing at both individual and societal levels . What isResearch on community wellbeing is largely centred on the development of indicators that aim to be objective tools of measurement , 8–10. SThere is a growing consensus amongst community wellbeing researchers that frameworks and indicator systems are best defined in collaboration and co-design with community residents, actors, and organizations , 12–14. This gap can be overcome by openly incorporating a plurality of perspectives directly from the community. These perspectives ensure that the outcomes produced will more meaningfully inform how societies operate, promoting more impactful progress . FurtherIn their work, researchers Kim, Kee, and Lee point to two drivers for the growing interest in community wellbeing as an instrument for policy: (1) there is a novel recognition that one-size-fits-all policies are insufficient in responding to community interests; and (2), especially in the face of limited public resources, national governments may be more inclined to hand off community wellbeing pursuits to local governments . Such inUsing semi-structured focus group interviews and thematic analysis methods, our aim for this study was to outline key themes and perspectives towards community wellbeing from a diverse pool of residents in four communities in Canada’s largest province of Ontario. Our goals were to (1) inform a framework of community wellbeing relevant to Ontario communities and (2) produce bottom-up, community-derived themes of community wellbeing using participatory and inductive approaches. While we present here our study of community wellbeing themes, in future work we will use the themes to develop and implement an organized framework of community wellbeing that can be scaled across Canada.To capture perspectives across diverse regional contexts, we recruited participants in four Ontario municipalities that vary across geography, population density, diversity, public infrastructure, and development: (1) The City of Toronto, (2) The Regional Municipality of Peel, (3) The City of Greater Sudbury, and (4) The City of Thunder Bay.The City of Toronto is Ontario’s largest metropolitan centre, with high population and resource density, cultural diversity, and transit infrastructure . The RegBetween May and July 2022, potential participants were invited to complete a focus group screening questionnaire to confirm their eligibility , capture key demographic information, and ask about necessary interview accommodations . The screening questionnaire was distributed using social media advertising and to participants of The Community Wellbeing Survey; a cross-sectional, online survey administered by the research team within our four focal communities in Fall 2021. We leveraged several networks to expand recruitment: (1) community organizations and advisory tables connected to the research team, (2) community organizations identified via online searches, and (3) email listservs and social media advertising. Recruitment materials were provided in English.Interview participants were selected from screening questionnaire respondents. To prioritize diverse perspectives, we selected interview participants through stratified sampling by region and demographic characteristics. The focus group composition was checked so at least 50% were women, were racialized , and there was a range in age and educational attainment.Focus groups were two hours in duration and held virtually via videocall in English with one facilitator and two co-facilitators (CM (f); AR (f); LP (m); CC (f)). Four focus group interviews, one for each region, were conducted with 3–4 participants each N = 15). The aim of the focus group interview guide was to obtain perceptions of community wellbeing from participants, considering their personal experiences and their perceptions of the experiences of others in their community. The semi-structured guide flowed through four general community wellbeing domains: social, physical, environmental, and political . Questio. The aimTo facilitate idea generation and discussion, a collage was shared with participants on screen depicting different community-related concepts such as informal social support , walkability/transportation , and necessary amenities  . ParticiTo orient participants to consider how social and physical components relate to the wellbeing of their communities, each section started with a brainstorming activity in which a prompt was shown on screen and participants were instructed to write down all the words that came to mind. After 30 seconds, participants shared their lists. Participants then answered questions regarding their individual and intersubjective experiences  within the social and physical components named in the lists.Interviews were audio recorded and transcribed, and respondents were compensated with a Can$50 gift card.a priori to abstract and synthesize the data based on a theoretical framework informed by existing community wellbeing literature . Following an initial review of the transcripts, further provisional codes were added. At this stage, more detailed descriptions of each code  were also specified. Using these provisional codes, interview transcripts were coded again and thematically analysed simultaneously by two coders using an amalgamation of descriptive and interpretive methods  about consistency, of being really accessible… and having the space to do that has always been in my head. A fundamental aspect—like I’ve got to find spaces”.1.2 Recognition: “I feel like I belong when I’m noticed”. In line with routinely accessing spaces, frequently visiting the same spaces was connected to developing recognition, familiarity, and rapport with people simultaneously visiting those same spaces:You can be a regular somewhere… [At] restaurants and stuff like that. And then you start making friends, and you expand your social circle, which I feel is really important… Like you see familiar faces.In other words, noticing familiar faces, and in turn feeling noticed, fostered a sense of belonging:I feel as though I belong when I’m noticed. But in a good way. Because I’m a commuter, there will be regulars on my routes. But the day they engage with you is the day where you realize that they’re looking out for you. I was late once. I was not on the route. The next day, “Oh… are you okay? Because I didn’t see you on your way to work yesterday.”1.3 Helping and engaging with neighbours. Neighbourly support was described as an antidote to isolation. For some participants, a sense of community belonging required more than just the presence of others, but to actively help one another. Having a common purpose was viewed as a motivating driver to support one another, which in turn fostered a sense of belonging:Having deeper relationships with people in your community gives you a sense of belonging… You know, you could reach out if they have the same situation as you. So, I feel like that could make you feel that you have people to rely on in your community rather than feeling isolated and alone.1.4 Shared identity and exposure to different identities. Participants viewed shared identity and group membership as strong determinants for community belonging. The most shared identities  were specific life stages and social roles , age groups, ethnicities, and shared political views:A lot of people I connect with, they’re either through work or school… Everyone’s around your age, so it’s easy to meet people. It’s easy to really sympathize and understand people there.While membership to specific groups was consistently described as central to fostering a sense of belonging, participants also noted how defining those groups too narrowly could create siloed communities. One participant reflected on events in their community and noted:All these events are tied so intimately with culture. Yes, you do have members of the community organising events like this. But again, there’s still some exclusivity because of how they communicate the events, how they promote it, how they recruit, and where you can get information.Relating to siloed communities, many participants expressed feeling that there was a lack of opportunity to connect with community members who they do not share an identity with. Specifically, participants pointed to a lack of broader community events and event spaces. For instance, one participant mentioned wanting to interact with people from other backgrounds:Where are the people of different cultures, and why are we not seeing each other? … It’s not like we’re integrated [or that] we see each other a lot. So, I would like to have more opportunities to have more diverse relationships.Moreover, there were sentiments of a deteriorating sense of collectivism at a larger societal level:I think we try to mind our own business more than we try to help out anymore. I think that’s just in a general sense. I wouldn’t say that that’s specific to my community. I think it’s just generally.2.1 The availability of important amenities. Participants identified several amenities that they considered key components of their local communities, and many defined the geographical bounds of their local communities through the presence of necessary amenities. Local communities were commonly defined as the space in which one could meet the core needs of daily living, “We’ve pretty much got everything everyone needs here, really… We could survive just in our own little community”.“I really enjoy the trails, distinct from the park, because it just allows you to disconnect and unwind for a bit”.Examples of amenities that were identified as key were grocery stores, places of worship, health care centres, recreation centres, and public greenspace. For instance, when identifying spaces and places that contributed to the wellbeing of their communities, a commonly expressed sentiment was how access to greenspace contributed to the physical, mental, and spiritual health of community residents, 2.2 Access to amenities. The accessibility of amenities was described across four axes: availability, affordability, physical access, and proximity.The availability (and unavailability) of health centres was a central discussion point across all groups, and notably, the affordability of mental health care. Affordability was also discussed in relation to recreational activities  and housing . One participant noted the unique barriers to access for Indigenous and recently settled community members:There are a lot of services that are overwhelmed that cannot take any more people, and they’re very limited in their funding. Indigenous peoples or newcomers, even if they could access the service, probably would be sitting on a waiting list forever.Physical access was discussed in terms of maintenance , and a shared responsibility to contribute to the maintenance of community spaces. Maintenance of one’s community was viewed as having intrinsic value–demonstrating a level of care and respect for where and with whom one lives:Everybody’s on the same mission to [keep] the place clean and safe for everybody to enjoy… Having people that care about the same kind of values … that you care about for your community is important.Additionally, the importance of functional transportation was seen as a necessary public good to guarantee residents’ proximal access. However, sentiments differed across geographies. Among residents that lived outside high-density population centres, public transportation was viewed as a necessary service to connect physically distant communities. On the other hand, views from residents living in high-density communities noted traffic and congestion which hindered mobility within their community.“The city would rather spend money on pretty things to make [the city] look good than actually fix the potholes where people can get hurt”.Residents felt their needs and wants were not reflected in regional decision-making. Specifically, many residents said that their community leadership ignored pressing gaps in basic needs, namely unaffordable housing, long wait times for health care, and unaffordable mental health services, One resident stated:The politicians need to get this little catchphrase out of their vocabulary altogether, “It’s not on my agenda.” Just because it’s not on your agenda doesn’t mean it’s not on everyone else’s. To me, affordable housing is really lacking… [as is] food security.A common thread was a desire to increase communications between community residents and decision-makers. For example, when asked what ought to be prioritized in local decision-making, one resident stated:Definitely the preservation of the lands, and truly respecting the Indigenous land by not just bulldozing it to build new homes. Like do some actual planning. Talk with your community. Get permission. It’s not going to kill you to get permission from the Indigenous communities. And, you know, just work with everybody.“I’m laughing because city council will hire a consultant, and then the consultant will give a report, and then they’ll do whatever they want anyway”.Another participant noted that even when residents’ opinions are collected, the decisions that follow are not necessarily informed by these consultations, Furthermore, many participants felt the most privileged tended to persuade decisions:So poor people, their concern is, how do I get food on the table? Middle class people say, is it nutritious? The wealthy say, is it pretty? So, the decision-makers say, is it pretty? … [Decision-makers need to understand] what happens when we don’t have a liveable wage.One participant from a focus group in Northern Ontario discussed how provincial policies did little to bridge remote Northern communities with decision-making centres largely located in the South:The ministry is based in Toronto [and] very frequently forgets that we exist. The premier thinks that we’re North Bay and not Thunder Bay… A lot of issues, we would say, fall upon the provincial government and not the local government… It results in nobody doing anything a lot of the time.As established, community wellbeing was perceived in relation to belonging, participation, spaces, access, and leadership. However, to flourish within one’s community, one must have sufficient opportunities to participate. One participant highlighted this connection, noting how community involvement is a privilege not afforded to all:There is an advantage to being well-connected in the community… We understand that in the society in which we continue to operate, networking [and] social connections [are] important not only for wellbeing but for other benefits [as well]. So, I see it as a privilege. You want to be well-connected, but you can’t. So, if you’re not as well-connected because you continue to work, you might lose out on other opportunities. Because to be well-connected is also to be well-informed. And information is a resource, and information is not always the easiest to come by either, especially when it’s the type of information that impacts your livelihood and your community, which in turn impacts your wellbeing.This same participant highlighted the difference in events hosted in the more privileged community they work in, versus the events hosted in the less privileged community they live in:But the priorities of [the more privileged] community are so different from the ones [in my less privileged community]… They can spend more time looking after their health… Whereas in [my community], you have more events geared toward language learning or … learning how to navigate the city… What we want to work towards is not the same for everyone.Most participants shared an intersubjective perspective wherein they recognized an inequitable distribution of resources within their communities. One participant remarked:I know there’s some places in our local community that it’s hard. Like right now [in one particular community–redacted detail], there’s somebody on every corner asking for money, right… I should be figuring out how to make everybody have what I have.Another participant discussed how historical and contemporary discrimination created disparities in how community members could flourish, particularly for Indigenous residents in their community:Acknowledging that the impacts of residential schools [and] the Sixties Scoop has done a lot of intergenerational trauma to a very large portion of Thunder Bay… A number of institutions in Thunder Bay still have systemically racist policies [and] practices.Notably, one resident felt the relative scarcity of resources created a tension between prioritising the needs of local communities and aiding others:Take care of the people that live in your own community first before you start looking at the world. I agree… I’m not saying that we can’t help people in the world, but at least help the ones at home as well.Our qualitative study identified components of community wellbeing through resident focus groups in four Ontario communities . We identified four themes of community wellbeing: (1) a sense of community belonging is cultivated through shared spaces, routines, support, and identities; (2) a community constitutes the amenities and social contexts that enable residents to thrive; (3) effective regional decision-making must be community-informed; and (4) the wellbeing of a community relies on equal opportunities for engagement and participation. Each theme encompassed perspectives on shared community amenities, values, and structures that residents saw as essential when considering the wellbeing of their community.The relationship between wellbeing and having access to diverse and rich social networks is well-established –31. MainHowever, some residents questioned the sustainability and resilience of their social communities. For instance, there was a view amongst some respondents that the strength of community belonging was weakening over time–citing a loss of collective identity. While we cannot interpret whether these sentiments signify a perceived or actual change in the strength of collective identity, it demonstrates that there is a need for community arrangements that facilitate social connection and shared purpose . Recent In addition to the social aspects of a community, community wellbeing is also dependent on the creation and maintenance of physical facilities that allow residents to fulfil their daily needs  . ServiceThe capacity to lend one’s perspective and be a meaningful contributor to local governance and decision-making were clearly defined components of community wellbeing in our focus groups (Theme 3). Participants identified the necessity of democratic processes that allowed for the alignment of their priorities and their leadership’s capacity to act on them. However, residents expressed that they were rarely consulted in regional decision-making. A commonly shared view was that local leadership did little to respond to gaps in basic needs, stating that decision-making often reflected the interests of those who had the time, resources, and connections to persuade said decisions.Considerations must therefore be made to include a plurality of diverse voices in discussions of community wellbeing. It has been routinely demonstrated that the opportunity to provide one’s opinion and contribute to community decision-making is hindered by those same inequities that must be deliberated–such as systemic racism, marginalization, and exclusion , 35. ThiOur fourth theme (subtitled “Flourishing should not be a privilege”), rather than being a distinct component of community wellbeing, revealed itself to be a cross-cutting layer that informed our other themes. The opportunity to engage in one’s community, whether it be socially, politically, or logistically, was seen as a privilege not afforded to all community residents. This privilege was resource-dependent, with those lacking time, assets, or social capital being excluded or otherwise preoccupied with addressing their daily needs.Participants discussed the systemic and historical nature of this privilege, with discriminatory and exclusionary practices being key determinants. For instance, participants shared how communities who have endured economic disadvantage, social marginalization, and racism  experience inequities in access to resources, participation in community-decision making, and the privilege to flourish in their communities. Regionality and geographical context were also top of mind, with participants from Northern Ontario (Greater Sudbury and Thunder Bay) regularly describing a disconnect between their communities’ needs and the priorities of provincial and federal decision-makers in more distant cities.The inequities identified in our focus groups reflect observations that communities exist as complex systems, where collective and individual interests often exist in a state of conflict , 35, 39.Researchers have begun to question the “scientific objectivity” of indicator systems , 13. Indtrustworthiness were integrated throughout [This research was strengthened by its use of well-established qualitative methods, within both our focus group interviews and thematic analysis. Principles of roughout . SpecifiDespite its strengths, this study has limitations in its design and analysis. Member checking of the data display was not performed, and the generalizability of the results may be limited by a relatively small sample. While member checking was not possible, the data display was discussed with local stakeholders and organizations to ensure the findings resonated with local communities. As mentioned, in an attempt to ensure that participants had a breadth of community experiences (both before and during the pandemic) to draw from during the interviews, we attempted to capture a diverse sample across age, ethnicity, gender, and time lived in one’s local community. However, the heterogeneity within and across groups was limited by the small sample and convenience sampling approach . Indeed, the majority of participants were ultimately between the ages of 26 and 40, women, and White. As such, there may be differences when generalizing to other communities across Canada. Future work is planned to expand on the methods and recruitment outlined in the paper to emphasize additional perspectives toward community belonging  and prioritize more inclusive modes of recruitment .Using qualitative methods, this study articulated themes of community wellbeing as they were experienced by a diverse group of residents in Ontario, Canada. We identified four themes of community wellbeing which spanned topics of social connection, physical facilities, inclusive decision-making, and equity. In describing each of these themes, participants also highlighted key barriers and inequities. Indeed, the opportunity to flourish in one’s community was shaped by local contexts and material stability, resulting in feelings of marginalization. However, participants still expressed an interest and desire towards engaging further in efforts that pertain to their community, indicating the importance of including mechanisms to integrate community voices and enhance collaboration between decision-makers and residents.In recent years, there has been a growing motivation to move past economic measures of progress, and towards contextual indicators of community wellbeing. This study underscores the value of participatory and inclusive approaches in community wellbeing research, where the viewpoint and life experience of residents is used to shape local decision-making and service delivery. Our findings point towards a need for including community residents in such efforts, especially considering historical and systemic exclusion. As local governments gain interest in understanding the wellbeing of their communities, such efforts should recognize community residents as experts on their own needs and value their essential role in building communities that support better lives.S1 Table(DOCX)Click here for additional data file.S1 Fig(TIF)Click here for additional data file.


In this article, I argue that the moral and legal distinction between “female genital cutting” and “female genital cosmetic surgeries” cannot be maintained without recourse to racist distinctions between the consent capacities of white women and women of colour. The physical procedures involved in these surgeries have significant overlap, as do their motivations, yet they are treated differently in everyday discourse and the law. This paper lays bare this double standard and presents and interrogates some of the reasons commonly given to justify their separate treatment. It concludes with the recommendation that the distinction be dropped in favour of more consistent consent-based stance, which avoids the racism and ethnocentrism that underwrites the present regime. According to this position, the only defensible moral and legal distinction is between those who can consent to these procedures, and those who cannot. The set of practices commonly grouped under the heading “female genital mutilation” (FGM) are widely reviled in Western contexts, where they are commonly presented as a form of gender-based violence and child abuse (see e.g. ). “FGM” nonmedical reasons. I therefore exclude cases in which the cutting is made in accordance with evidence-based medical practice in order to attend to an existing or impending threat to wellbeing posed by diseased or dysfunctional tissue.Before I begin, several points on scope and terminology should be noted. First, I refer to “female genital cutting” instead of “female genital mutilation,” because: (a) value-laden terminology tends to foreshadow discussions of genital cutting, and while some people consider their genitals to have been mutilated, others view cutting more neutrally, or even as an enhancement; (b) it is more consistent with the neutral terms used for other forms of genital modification, i.e. “male circumcision,” “intersex surgery,” and “female genital cosmetic surgery.” Second, I use the term “Western” to refer to Europe, North America, and Australasia, and “non-Western” to refer to all other contexts. This is a troubling dichotomy (see e.g. ), but onNeither FGC nor FGCS refers to a single practice; both are umbrella terms for a wide range of modifications which range in severity from piercing or pricking the clitoris or labia to removing most of the external clitoral and labial tissue and suturing the vaginal opening. It is therefore important, when encountering these terms, to establish the precise details of the practice under discussion. Attention must also be paid to differences in the motivations of those who request the cutting, its prevalence, and the consent status of the person whose genitals are cut. These details ought to be relevant to any moral or legal response to these practices.Elsewhere, writing with Brian Earp, I have mapped the overlap between FGC and FGCS, comparing each component of the World Health Organization typology  of “femaAs Fig. non-physical reasons to treat FGC and FGCS separately, and that we should instead focus on the intentions and meanings of the practices. . I will now discuss some arguments that may be given in defence of the separate treatment of FGC and FGCS, and will show why these attempts to ground a significant difference between the practices do not succeed.It might be objected that there are other, In some contexts, FGC is practised with the explicit intention of curtailing female sexual pleasure or reducing promiscuity. However, this is only one among many motivations that vary considerably across the many disparate contexts, cultures, and practices of FGC. Amongst the many reasons for practicing FGC are the belief that cut genitals confer “normal” adult sexual identity, are more hygienic, represent ritual purification, are aesthetically pleasing, and that the practice satisfies a religious requirement .Further, there is no community globally that practices female genital cutting and does not also practice male genital cutting—though many communities only practice male genital cutting—and the motivations for the two are often similar or identical. Indeed, the disciplining of sexuality is also sometimes a motivation for cutting male genitals . Yet in If the desire to challenge patriarchal practices is the reason for the draconian approach to FGC, FGCS should not get off so lightly. FGCS is widely acknowledged to be motivated by adherence to the aesthetic ideals portrayed in the highly-visible, increasingly hairless vulvae displayed in pornography , in whicIn the UK, FGCS is exclusively performed in clinical settings, and is therefore liable to be safer than practices that are excluded from clinical settings by criminalisation. Even so, FGCS is inadequately regulated in most contexts, including in the UK , and theFGC is often represented as a procedure performed in rural, non-clinical settings with unsanitary instruments. Such depictions dovetail with Western conceptions of FGC as a “barbaric” practice carried out by “backward” peoples. In fact, a large and growing proportion of FGC in high-prevalence settings is performed by surgeons under clinical conditions, in much the same manner as FGCS . This ouEven when performed in clinical settings, the more serious practices within both FGC and FGCS are high-risk surgeries, with many possible (and overlapping) complications. While traditional cutters working in non-clinical settings are usually highly-skilled, it is obviously more difficult to manage complications outside clinical settings. However, this may be taken as an argument in favour of medicalisation rather than outright prohibition, which tends to drive practices underground, leading to greater risk .Third, no nonmedical bodily modification is completely risk-free, yet many are readily tolerated: i.e. body piercing, tattooing, orthodontics, laser hair removal, indoor tanning. It may be that there is an acceptable threshold for risk, but that would need to be determined by consulting empirical data on outcomes and complications and making careful arguments based on those facts. But that data is not readily available, careful arguments have not been made, and regardless, a risk threshold could not feasibly rule out all FGC procedures while supporting all physically-comparable FGCS procedures. Further, a consistently-applied risk-threshold would likely also outlaw nonmedical male genital cutting and intersex surgery.In the absence of an evidence-based threshold and consistent regulation, distinctions based on “safety” are unfounded, and are liable to act as cover for more dubious bases for delineating the two practices.FGC is often, though not always, performed on children. In some cultures, FGC is carried out in adolescence, and is precisely the act that confers adulthood, which poses a challenge to Western conceptions of childhood and adulthood and their relationship to the acquisition of the capacity to consent . It is aall nonmedical surgeries. And if current FGC legislation is designed to protect children, then its current extension to adults is not justifiable, or, at least, requires separate justification. Current legislation in England, Wales, and Northern Ireland refers throughout to “a girl” and then later notes that “Girl includes woman,” thereby explicitly announcing its intention to depart from the usual legal norms and treat (particular) women as lacking the consent capacities that are usually afforded to adults  you are beautifying the labia. It’s normal” .Further, if the prohibition on FGC is justifiable because a near-inviolable cultural norm dictates its practice, which more or less rules out the possibility of it being chosen, even by adult women, then male genital cutting—a practice which modifies the genitals of infants who cannot consent, in order to meet a near-inviolable cultural norm—should also be prohibited on those grounds. Clearly this alone cannot explain the differential discourse regarding FGC and FGCS.The cultural-cosmetic and voluntary-coerced distinctions are drawn far too quickly, and cannot straightforwardly ground the distinction between FGC and FGCS. The question of consent to such practices, even for adults, is a vexed one that philosophers contend with in their engagement with the problems of “false consciousness,” “adaptive preferences,” and “damaged autonomy” , 23.people who practice them are perceived.My arguments so far can be summarised as follows: FGC and FGCS not only have significant overlap in terms of their physical details, both practices are also risky, often performed on minors, and are motivated by cultural pressures, some of which are unambiguously patriarchal. Treating FGC and FGCS differently despite these social and physical similarities indicates that the real driver is how the Western women are seen as rational agents, making their own choices about their bodies in a society in which patriarchal norms are weak or absent. Women of colour are instead seen as victims of their cultures and their menfolk, unable to make choices about their bodies due to the combined force of patriarchal pressures and the limiting cultures in whose shadow they live. One of the ways in which the “West” distinguishes itself from the rest of the world is via the myth that Western societies are either culture-free, or are governed by “civilised” cultures premised on autonomy and rationality, within which each person is able to make her own decisions. By contrast, “non-Western” cultures have long been portrayed as “backward,” “uncivilised,” “barbaric” places, saturated with cultures which prevent their inhabitants—and especially their women—from acting autonomously or rationally .The dichotomy between the consenting white woman and the subjugated woman of colour is not only false, it is racist. Yet existing attempts to differentiate FGC from FGCS invariably rely upon, and reproduce, this distinction between white, Western women and girls, whose decisions are respected as instances of the freedom to make choices about their bodies, and non-Western women and girls, most of whom are people of colour, who are deemed to require the intervention of benevolent Western actors in order to be saved from cultures which harm them . The ploNot only do these representations themselves oppress women of colour and further limit their decisional space, but they prevent those in Western settings from critically analysing their own cultural practices. As Gayatri Chakravorty Spivak writes, it is important that we are able to ask “who is the other woman? How am I naming her? How does she name me?” . WesternI have argued that there is no distinction, physical, cultural, or otherwise, that can justify the differential treatment of FGC and FGCS in legal and public discourses. The current distinction appears to be made on the basis of the race, culture, or nationality of the girl or woman in question, which draws on, and entrenches, racism and ethnocentrism. The categories should be collapsed, and genital surgeries should be managed on a case-by-case basis, with attention to standard medical considerations, like age and level of risk. Professionals who regularly encounter FGC and FGCS would benefit from more consistent messaging, rather than being required to fall in line with a discriminatory, two-tier system .without the capacity to consent to nonmedical genital modification—including intersex and male genital surgeries—should be protected from irreversible bodily changes until such a time as they are able to express their own wishes.I will finish by noting that while the distinction between FGCS and FGC is indefensible and should be scrapped, there is an obviously defensible distinction that should be consistently applied: that between those who have the capacity to consent to genital cutting, and those who do not . I do no