Background: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people.Methods: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-of-life service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, non-participant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases.Results: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were ‘outsiders,’ the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health.Conclusion: These end-of-life care service models operated in a space between the healthcare system and the person’s life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact. This includes people with advanced, progressive, incurable conditions, general frailty, and coexisting conditions that mean they are expected to die within 12 months.6At the 8 Social relationships and networks can buffer distress or crisis situations, prevent family carer burn out, and demonstrate the importance of social contexts.10 However, existing networks can be small and fragile, community engagement reduced by existing caregiving responsibilities, and with formal care services providing little practical support.9 Older people may have smaller social networks, and family carers themselves may be older. Compared to other caregivers, end-of-life caregivers provide nearly twice as many hours of care per week and, report more care-related challenges.11 Social isolation of itself also has a major influence on health, comparable with well-established risk factors for mortality.12 For older people in particular, innovative solutions and service models may be required that enable and bolster networks of care.An important element of care provision towards the end of life may be based within and from the community, provided via social networks and using people’s social capital.19 What these interventions share is their mediation by health or social care professionals working within formal care networks, often with a relatively narrow focus. It may be that service models that sit outside these formal care networks could offer a flexible, innovative, community focused solutions to improving access to care for those who may not usually access palliative or hospice care services, meet needs and enable improved quality of life.Service models to facilitate access to healthcare for frail older people include care coordination, case management, care navigation, and integrated care, with variable effects on outcomes such as satisfaction, health status, healthcare utilisation or place of death.In this paper research is presented exploring the impact of a new service model of care towards the last years of life for older people. A UK charity focused on older people (Age UK) set up 3 pilot services facilitating care to older people thought to be in their last 12-18 months of life. Sitting outside the formal healthcare system, the service model involved a number of aspects. First, encouraging referral of those thought to be in their last 12-18 months of life primarily through working alongside general (family) practitioners and publicity to local health and social care providers. Second, training staff  to enable conversations with older people and facilitate integrated support to achieve personal goals. Third, mobilising volunteers to provide support where required. Such services were provided alongside any existing care. The aim of this research was to understand how and why this new charitably provided community model of end-of-life care influences the experiences of older people.21 As the services were new, a longitudinal design enabled tracking both service development over time (6 months), and any changing impacts from those using the service. The case was defined as a location providing the new model of care and those involved with commissioning, referring to, delivering and receiving the service.We conducted a multiple exploratory longitudinal qualitative case study research strategy.Three locations piloted the new service model, and these formed the 3 cases for the research. Each served a different geographical area. Brief information on the geographical area each served is given in Participants included older people receiving care from the new service model, their family carers, service providers and other stakeholders including general practitioners, community nurses, and Age UK charity staff. A broad definition of ‘family carer’ was used, including those related through committed heterosexual or same sex partnerships, birth or adoption and others who have strong emotional and social bonds with the service user. They are lay, unpaid, people in a close supportive role who share in the illness experience of the service user. Inclusion and exclusion criteria for older people and family carers are specified in A convenience sample of older people referred to, and receiving care from, the service in each location was obtained, and if available, their family carer. A sample size of up to 10 older people and 5 family carers was anticipated per case. All those providing direct care as part of the new service model, and a purposive sample of stakeholders to include a range of people from different professional backgrounds with an interest in the service, were invited to participate.Those providing the service distributed recruitment packs . Older people who indicated interest were contacted to arrange a face-to-face visit, where written consent was obtained. Older people were asked to pass a recruitment pack to a family carer of their choice. Staff and stakeholder participants received information about the study either directly from the research team, or via the service managers.Six forms of data collection were used:Individual interviews : Older people and/or their family carers were interviewed to explore their experience of receiving the service. Initial interviews were face to face, with follow up telephone interviews offered approximately 3-4 months later. Demographic data were collected at the first interview. All interviews were conducted by SD or CW, digitally audio-recorded and transcribed.One-off focus group interviews in each case study site with staff and stakeholders to explore views on the service. These were conducted by CW or SD and digitally audio-recorded and transcribed, and details only of the roles of participants collected.Non-participant observation of a service or other relevant meeting within each case study site were conducted by SD and facilitated an understanding of service processes.Non-patient specific documentary materials such as service brochures were collected from each case-study site to understand how the service was conceptualised and publicised, referral and other service processes.Service provision data : Anonymised aggregated data were provided by the sites summarising demographic information on all referrals received.Deliberative panel discussion workshop: A cross-case deliberative panel was held with staff key workers and stakeholders, together with selected professional and lay experts. This consisted of brief presentations of core findings followed by small group facilitated discussions. The panel was facilitated by CW, NP, and SP. The purpose of the deliberative panel workshop was to discuss the emerging findings of the case studies, to facilitate interpretation and identify key themes.A topic guide for the individual and group interviews, and the deliberative panel, can be found in 23 The approach involves a systematic 5-stage process of familiarisation, identifying a thematic framework, indexing, charting, and mapping and interpretation. An a priori thematic framework22 was informed by 4 theoretical propositions developed from an initial scoping review of qualitative literature examining outcomes of services for older people with similar features:Framework analysis, used in previous palliative care case studies and which facilitates integration of different forms of data, was used to facilitate within and cross case pattern matching.Enriching relationships: Relationships engendered feelings of being more cared for, respected, loved, and secure.Greater autonomy and perceived control: People felt more empowered, understood, consulted.Knowing more: More involved and informed. The intervention promoted a greater level of engagement and knowledge in the patient about their condition.Improved mental health: People felt less anxious or stressed. They could also be more confident, more independent and more assertive.This framework iteratively developed throughout the analysis. Analysis was primarily conducted by SD , with cross checking and agreement of coding with CW , and discussion with NP and SP (researchers with nursing and psychology backgrounds) to debate areas of disagreement. Cross case pattern matching follows to identify thematic factors associated with challenges and successes in influencing the experience of older people whilst taking account of context. All qualitative analyses were managed using NVivo™ software.Twenty-three service users and 5 informal carers participated across the cases, their demographic information, and that of all referrals received are found in In site 1 follow up interviews were conducted with 4 service users and one informal carer and in site 2 with 2 service users but were not possible in site 3 due to deterioration or death of participants. Initial interviews lasted a mean of 26.3 minutes (range 8.4–45.3). The 2 focus groups lasted 56.3 and 71.1 minutes. The focus group in site 1 had 7 participants , and in site 3 had 5 participants, all provider staff. A full day deliberative panel workshop included a number of different discursive elements across the day. Participants for the deliberative panel are summarised in The cross-case analysis is presented here, as the 3 overarching themes identified from the analysis. First, organisational identity, exploring how and why the services conceptualised and organised themselves, and how they fitted with existing service provision structures. Second, flexible provision, how and why services were provided, their focus, and the type of care offered. Third, the impact and experience of the service, how people experienced the services, and what the impacts of the service were for users.These services were often perceived as ‘outsider’ services, although this was not clear-cut:“I think we are insiders, in that we are a community service, so we are maybe within the community voluntary sectors providing a community service, but I suppose outsiders in terms of we are not health professionals” (Deliberative panel - staff).Being ‘outsiders,’ compared to health and social care staff, could be perceived as an advantage:Speaker 1: “the plus about us is, we are outsiders…we have a staffing that is more fluid (…) and that fluidity is what is noticed very much by statutory services isn’t it.”Speaker 2: “The flexibility we bring is exactly the opposite of an institutional approach and, of course, our workers will do whatever” (Site 3 Focus group - staff).The service staff also often regarded themselves as outsiders, and whilst this could be a source of frustration in gaining credence with and access to healthcare providers , they recognised that this enabled them to take risks, that would not be allowed by public service professionals because of bureaucratic processes:“We go, ‘oh come on,’ and we just get it done…, risks work, they work very much in favour of the clients, (…) we will do those things that can’t be done under that red tape” (Deliberative panel - staff).“You walk into someone’s house and you know, they’ve got no food because they haven’t got a fridge, and you know, you’re the only person that’s going to see them for the next week, as an organisation we’ll go and get them a fridge, and we’ll carry the fridge into their house and we’ll plug the fridge in. But, you know, I think of the millions of risks attached to…” (Deliberative panel - staff).‘Risk taking’ was almost universally perceived to be of benefit to clients. Typical risks were unlikely to pose direct harm, but which, as in the examples above, circumvented ‘red tape’ to meet expressed needs directly and rapidly in the way that a friend or neighbour might do.The predicament of being an outsider was that it could be hard to establish credibility and form a clear identity for the service. This could make it more difficult to gain a sympathetic audience with potential referrers, particularly when the purpose of more flexibly provided services may not be clear to them. The services struggled initially to gain referrals, and recognised that their planned associations just with general practices needed to be widened.The case study sites differed in the structure of their approach, within the overall initially proposed service model. For example, site one had a more structured approach, restricting their role to a narrower range of predefined tasks such as future care planning and assistance with benefit applications. Whereas, in site 3, more flexibility and autonomy could be seen in how they interpreted their role and what to do with service users, for example in providing more direct befriending services and a ‘listening ear.’ In site 2 their service had developed away from a fixed approach toward becoming more flexible in their response to need:“I think we started off with quite fixed criteria and within a very short time we realised it’s not going to work, and you do have to become more flexible, don’t you, and the things that you were perhaps thinking, like we were saying about advance care planning and power of attorney…you thought you would be really focusing on those” (Deliberative Panel staff member).Flexibility however, resulted in challenges expressing their service identity or purpose, despite the benefits of responsiveness or addressing unanticipated needs:“I think the holistic thing is important in this role, because if that…I’ve got one client that I’ve done, I think, seven different things for him and that varies from maximising his income, referral to occupational therapy, getting him some rehabilitation at home, getting him out and socialising ” (Deliberative panel - staff).Lacking a clear, defined, identity and purpose was confusing both to referrers, affecting referral streams, and to service users initially who could be confused about the referral and its purpose.The relational aspects of care, and human contact, appear important. Service users expressed satisfaction at being party to a new relationship, in some case likening it to a friendship, providing much needed company and contact with the outside world. The relationship in and of itself could be experienced as a profound impact of the intervention:Interviewer: “What would you say have been the biggest benefits you’ve felt from the service?”Service User: “Just knowing them. Such satisfaction of knowing these people” (Interview S1P4).The depth of the relationship could differ, but it was common for service users to emphasise their appreciation for the relationship, irrespective of how formal or ‘loose’ the relationship was:“It’s important for the likes of me to have that lovely regular but loose connection, a little bit of a chat, a little bit of support, little bit of understanding. A lot of understanding and to help where necessary, yeah?” (Interview S2P6).Service staff felt that it could take time to build up relationships to enable in-depth discussions, but that this was not always possible when someone had a limited prognosis:“Basically because of capacity, that the time it takes to do that kind of work and the relationship…the time it takes to build up the relationship to have that kind of conversation about end of life, really” (Site 1 Focus Group - staff).Despite this, service user’s trust for the service staff could reach a level where they felt that they could act like a confidante for them, facilitating frank conversations that the service user might feel uncomfortable having with friends or family:“I didn’t know who to turn to, or anything, but now I’ve got someone I can turn to that I know I can… you know, you don’t mind confiding in” (Interview S2P4).Such relationships could affect people’s state of mind:“The most important thing is knowing that there’s somebody there who you can contact if you’re unsure of any difficulties, and if they can’t give you the answer, they know somebody who can….. And I think that’s very important that you know that there’s somebody out there, you know, who can” (Interview S1P7).Service users appeared to derive psychological benefits from their relationships with the service staff:“If you’d come before she started coming, you would have noticed a difference in me, you know. I just didn’t want to talk to people and, you know. It’s only a few visits, but it’s so much” (Interview S3P2).Others made explicit references to impacts such as alleviation from worries or anxiety:“Very aware that, obviously, I’ve problems and worries and things, so she put my mind at rest about a lot of those so I didn’t feel at all intimidated by her coming in to talk to me or asking me questions” (Interview S1P3).“Keeping me chirpy and not going down that pit of anxiety, she’s there. She’s there. Yeah. (….) It’s an extra, it’s an extra part of being comfortable with who I am and what I can do and what I can’t do” (Interview S2P6).Service users also mentioned greater feelings of safety and security:“It takes pressure off you because you feel… I know this sounds daft, somebody my age, but you feel safer somehow and that’s a big thing” (Interview S1P7).In more vivid terms, this service user described the feelings of protection and security he felt:“I’m not standing on the end of a cliff feeling like I’m going to fall, you know what I mean? And they come and help, it’s like having a barrier and they put a blanket round you and cuddle you” (Interview S1P9).Service staff frequently supported service users to apply for financial benefits, making up a considerable shortfall in the service user’s finances:“It [new financial benefit] will make a big difference to me, yeah, (…) That’ll pay the carers , but then I’ve got to live on my savings” (Interview S3P5).For some individuals the company of the service staff or volunteers could constitute a rare instance of social contact, and where they could be enabled to leave their homes and be part of a world they had lost:“I’m so used to not being out for so long, you know, that it’s a treat for me to sit here and think, you know. Well, when she asks me another time, you know, one day, ‘What shall we do?’ I shall say, ‘Well, let’s go around and have a look at the new café,’ It doesn’t take much to please me if I go out” (Interview S3P2).The services occupied a distinct space in their local care landscape in providing a different, but needed, form of care to older people towards the end of their lives. They identified challenges articulating and defining the form of provision, and this resulted in subtle differences in service scope, form of provision, and the degree of responsiveness and flexibility. Services were perceived to be ‘outside’ the norm of service provision, but this enabled them to take more risks, responding to need in ways not possible for traditional service providers. Service users reflected this ambiguity, with some lack of clarity about the purpose of the service. However, where a relationship developed, this was described as having a needed impact on feelings of having a friend, on being part of, or re-engaging with, a community, and having someone to turn to. There were impacts described on mental health issues such as general worries, anxiety and depression, with people feeling safer and more secure.25 Habermas argues that as social complexity increases, our economic and political systems become disconnected from the personal or family lifeworld. These services could be seen as operating in a space between the  system and the  lifeworld, where there could be discomfort or conflict if they bring the attitudes, values and needs of the patient’s lifeworld into a rule-bound and risk averse healthcare system. Occupying these spaces can be experienced as ambiguous, where the social expectations that may be between, say a nurse and a patient, are suspended, making this a ‘liminal’ or ‘threshold’ space. Service users appeared to recognise these services occupied a different form of space, with different expectations than of formal care services.These services operate in a space that can be understood with reference to Habermas’s description of system and lifeworld.28 The concept of liminality can both conceptualise the ‘betwixt and between’ nature of the space between living and dying or where serious illness alters a certain lifeworld,30 and the flexible services that can operate between system and lifeworlds.31 Liminality expresses how they existed in the interstices between categories of insider/outsider, inhabiting characteristics of being an outsider such as being risk-taking, flexible, and exerting affective labour, while, simultaneously, exhibiting characteristics of insider status such as being paid workers for a well-known charity, gaining access to service users through family practitioners, and having a degree of expertise in their field. There was a degree of agency and choice at work in how each service choose to work with liminality and interpret the identity of their service, pushing their working practices towards structure or flexibility, insider or outsider, and risk takers or risk averse services.These concepts of system and lifeworld have been used to explore issues such as hospice provision, community nursing and public involvement, where there is also perceived to be a space, or shift in lifeworld.32 or being in hospital.33 There is evidence that home nursing services can enable a feeling of safety,34 and that if neighbors are trusted, that engenders a feeling of safety that improves self-reported health.35 Feeling safe and secure appears to protect against frailty.36 Whilst we report that older people reported benefit from the relationship itself, rather than a specific impact of the relationship, there is strong evidence that social relationships, loneliness and social isolation affect mortality risk.37 Whilst the ‘lifeworld’ places importance on people and relationships, it is likely that this impact on health and well-being could influence use of healthcare ‘systems.’Engendering a feeling of safety, security and being cared for was also important to the experience of receiving the service. Feeling safe is emerging as a core concept in many healthcare decision-making processes, including decision-making about going to emergency departments38 Access to palliative care services for minority ethnic populations remains challenging,39 and despite one case study being situated in an area with a considerable minority ethnic population, it appears these services may not be the answer to addressing this inequitable access. It was challenging to capture repeated interviews, primarily due to health deterioration or death, and the planned longitudinal understanding is not present in this analysis. Only 2 of our initial 4 theoretical propositions were fully supported by the data; those of enriching relationships and improved mental health. Our initial scoping review drew from a number of studies on advance care planning, given this was planned to be a focus of the intervention studied. However, such planning conversations were not a key part of the service model in some locations, and it may be this is why propositions on autonomy and knowledge were not supported by these data.The case study approach enabled a multi-perspective understanding of how and why these new service models had an impact on service user experience. However, we captured little of the family carer view on these services and their impact, and it may be that family carers have different opinions on services and their impact. Information about the study was given to service users by the services, due to requirements of our research approvals. They may have selected potential participants in unknown ways that introduces bias, for example those who may have expressed positive opinions of services received. We do not know how many were given information packs but chose not to participate. Our sample was primarily White British, which reflects the users of these services, and typical users of many end-of-life care services.Policy-makers and practitioners should consider facilitating or initiating such services as they appear to have value. Account needs to be taken of ways of enabling sufficient time to allow flexibility and reasonable risk taking that appear vital to success, even if referrals and service usage increases. Evaluation should be integral, taking account of how contexts shape such services, and consideration should be given to attributional and/or longitudinal designs to strengthen the evidence base and enable appraisal of service outcomes such as on quality of life.Flexible, responsive, person-centred services, operating in the liminal space between the person’s life world and formal health and care systems, appear to have benefit for older people thought to be towards the end of their lives. The benefit is likely to be in aspects such as developing relationships, feeling connected and safe, and well-being. These benefits may have an impact on mental health, mortality and service use.North-West Liverpool East Research Ethics Committee granted approval on February 2, 2018: 17/NW/0705.Authors declare that they have no competing interests.CW, NP, and SP secured the funding to conduct this work and were responsible for conceptualising the study. SD and CW collected and analysed data. SD drafted the initial manuscript, and all authors are responsible for critical revisions and approval of final manuscript.This work was supported by Age UK.Supplementary file 1. Data collection topic guides and schedules.Click here for additional data file.Flexible service models that are provided without formal, statutory health and social care funding may offer particular and specific benefits to older people towards the end of their lives.Service models provided outside of usual care provision should be enabled to be flexible, responsive and risk taking to facilitate a different sort of impact on older people.Articulating the roles a new service model may provide is important, but there should be the facility for this to change in response to actual patient need.Supportive end-of-life care service models operating in a community or voluntary provided space are likely to have an impact on enriching relationships and improving mental health.Older people who live at home towards the end of their lives may have care and support needs that are not met by traditional health and social care services such as nurses, doctors or social care services. We found that a new, charitably provided, service model focused on responsive identification of care needs, service referral and befriending operated in an important space between formal care services and the support of friends and family. They appeared to help people to feel safe and secure, re-connect them with their communities, and enable improvements in people’s mental health. Service providers could consider how they may replicate such care models within their own contexts.


Particularly in cases where evidence is not solid, they must remain objective and not fan fear. Maintaining good scientific practice can be challenging, especially when a debate is emotionally charged and simple answers for complex issues are demanded. Recently, this was the case with the debate about  standard time vs. daylight saving time. In this publication, we address the common misconceptions and pitfalls for good scientific practice that accompany this discussion and deduce suggestions for future directions, which may help resolve them. Beyond this, we argue that it is not wise to simply “explain away” the public opinion or preference and we therefore recommend strategies that could support a discourse aiming at getting the public “on board”. Finally, we suggest that, in societies where the light environment is becoming increasingly complex, it may be time to reconsider the prevailing current relationships between solar and social clocks.As experts, scientists must inform the public and political actors about relevant topics by providing a well-balanced analysis and overview of  Therefore, we and others argued that the available scientific evidence should not translate into such a fatal vision of a future under perennial DST [not to fan fear, particularly when evidence is not solid or ambiguous. Providing such a well-balanced perspective can be challenging, especially when a discussion is emotionally charged, and scientists are asked to provide simple answers to complex problems—as was the case with the DST/ST discussion. Unfortunately, several misconceptions and shortcomings in the arguments commonly employed in the scientific discussion of this topic have become evident. Here, following clarification of the scientific consensus position regarding perennial DST/ST, we would like to address the most important misconceptions and recommend steps for future directions that may help to resolve them. Beyond this, we will argue that it is necessary to bring political actors, scientists, and lay people together for the outcome of the debate to be most beneficial to society. Eventually, we suggest that it may be time to reconsider the prevailing relationship between solar and social clocks.In autumn 2018, an announcement from the European Commission President that the bi-annual clock change in Europe would be abolished triggered a debate about whether Europe should choose perennial standard time (ST) or daylight-saving time (DST). In this context, scientists also voiced their opinions on what would be the better choice. Some researchers warned against enormous problems this would cause for public health and well-being, a perspective that was also well-perceived by the media [nial DST . We woulThe current consensus position is that the risk of negative effects on, for example, public health and safety would be higher under perennial DST than under perennial ST  know. Especially in an emotionally charged debate, where scientists’ recommendations might clash with people’s preferences and perhaps even with the results of a referendum, we otherwise risk squandering scientists’ credibility in the long run.Calls for a balanced perspective in the DST/ST debate, which must also highlight missing evidence, have repeatedly been countered with the objection “you just ask for more research”, which has sometimes even been called a “dangerous” position . First, like a perpetuum mobile, research will naturally always generate new questions and result in the need for more research. Critically though, this objection seems to be used to argue that, in cases where evidence from existing research is not solid, adopting a one-sided perspective was justified. While we agree that political actors need scientists’ advice in the DST/ST debate individual level”. While this may theoretically be true, it is misleading in two ways. First, it suggests that myocardial infarction in an individual can be prevented by abolishing clock change. In the same vein though, one could also argue that the change from DST to ST in autumn saves lives. Importantly, both claims would, however, require that myocardial infarction or its prevention can, beyond doubt, be attributed to this event. As this will hardly ever be possible, the statement is neither verifiable nor falsifiable. Second, any conclusion about the level of the individual is not allowed from group-level analyses [Most scientific publications do not, due to their design and statistical analysis, allow for interpretations on the “level of the individual”. This becomes especially relevant when communicating the risks of, for example, a disease and its association with certain (risk) factors. In the DST/ST discussion one question, for example, is whether the negative effects of the transition to DST in spring on, for example, the risk of myocardial infarction, are balanced out by the positive effects that have been reported for the switch to ST in autumn  . Moreover, they do not, unless the study design is otherwise identical, inform about the relative meaningfulness of factor A in comparison with factor C . Such a comparison could, however, also provide key information about a factor’s practical meaningfulness.Scientific studies are usually designed to find an effect of factor A  on dependent variable B . In order to isolate such an effect, the experimental design controls for confounding factors, for example by keeping them constant. Such studies allow for conclusions regarding whether factor A has an effect on the outcome B, and statistical effect sizes allow for a quantification of an effect in this very setting independent of statistical significance and sample size. While reporting effect sizes is nowadays, in many fields, the norm rather than the exception, their interpretation often remains challenging. This is because, as we will explain below, statistical effect sizes do not necessarily r = 0.2). Roenneberg, Winnebeck, et al. [In the DST vs. ST debate, the only empirical study directly investigating the effects of perennial DST and ST found, for example, that DST was associated with an increase in “social jetlag” (SJL) , which i, et al.  however , et al. . Here, w, et al. , a measu, et al. ).On a less methodological note, there is universal agreement that light is the strongest zeitgeber for the biological clock . EarlierFurther support comes from a recent publication by Shochat et al. . Here, tare the experts and the risk for negative effects does seem to be higher with perennial DST, pressing for a policy simply because “we know better”, especially when the public has been asked for its opinion beforehand, has usually not proven wise. Therefore, political actors and scientists should take great care to create understanding for a, perhaps unpopular, decision.Beyond a necessary scientific discussion, the DST/ST debate should, in our opinion, not just ignore the public preference and scientists should not just try to simply “explain it away”. While scientists In an EU survey, in which <1% of the population of the EU (70% German) participated, 84% of the respondents voted to abolish clock change. If it was abolished, 56% would keep perennial DST whereas 36% would favour perennial ST, with only 8% indicating no preference (for survey results see ). In addMoreover, the simple claim that (i) the preference for DST in the EU survey only resulted from a preference for the word “summer”  and (ii) that, if the EU survey had been conducted during winter, the majority would have preferred ST ,8, does risk of negative effects associated with perennial DST is higher than with perennial ST [magnitude of potential detrimental health effects is yet to be determined from solid empirical data, scientists need to be particularly careful about what and how they communicate their recommendations to the public. In this context, it also seems important to prevent the impression that they put themselves before people and ignore their concerns and preferences. This seems particularly relevant in times when scientists’ authority and credibility is challenged publicly even by leading political actors. We therefore encourage a discourse, which aims to get the public on board, that could include think tanks led by independent institutions, such as the National Academy of Sciences Leopoldina (in Germany). Eventually, in societies where artificial “circadian-active” light is so readily accessible and we spend most of the day indoors, we should welcome and encourage a broader discussion about the adequacy of the prevailing timing of social schedules relative to natural light–dark cycles (the “solar clock”). This seems especially timely as the EU survey indicated that evening leisure time activities are an important reason to favour perennial DST.In conclusion, although the magnitude of the potential effects of perennial DST cannot be reliably determined from the available data, the current state of research suggests that the nnial ST . Especia


Hypertension, a major risk factor for non-communicable diseases, remains poorly controlled in many countries. In the Philippines, it is still one of the leading causes of preventable deaths despite the accessibility and availability of essential technologies and medicine to detect and treat hypertension. This paper characterizes the ‘therapeutic itineraries’ of people with hypertension from poor communities in rural and urban settings in the Philippines. We employ longitudinal qualitative methodology comprised of repeat interviews and digital diaries using mobile phones from 40 recruited participants in 12 months. Our findings demonstrate that therapeutic itineraries, rather than being organized according to categories that stem from the structure of the health system , diverge from clinical pathways. Therapeutic itineraries begin at a stage we label as ‘pre-diagnosis’ (PD). Following this, itineraries diverge according to two possible entry points into the healthcare system: via incidental diagnosis (ID) whereby participants were diagnosed with hypertension without deliberately seeking care for hypertension-related symptoms and symptom-driven diagnosis (SD) whereby their diagnosis was obtained during a clinical encounter specifically prompted by hypertension-related symptoms. Participants whose itineraries follow the SD route typically oscillated between periods of regular and intermittent medical treatment, while participants who were diagnosed incidentally (ID) typically opted for self-care As we follow our participants’ therapeutic itineraries, we explore the confluence of factors informing their care journey, namely, their conceptions of hypertension, their social relationships, as well the choices and trade-offs they make. We conclude with policy implications from our findings, chief of which is our proposition that models of care based on mere access and availability of clinical interventions fail to reflect the complexity of people’s lay understanding and their lived experiences of hypertension and are thus ultimately unhelpful in improving its control. In thisConcerns about the poor control of hypertension have been supported by a growing number of qualitative studies on the knowledge and attitudes of people with hypertension about their condition. These studies have shown how people’s perception of the disease as an asymptomatic condition and their concerns about the side-effects of long-term medication use often contributed to poor hypertension control . Taken tIn recent years, there has been increasing recognition that understanding ‘patient pathways’ by privileging the factors affecting people’s decision-making process throughout the continuum of care, from initial diagnosis and initial treatment throughout follow-up and adherence, is key to improving effective response to the poor control of hypertension . One of patients has also been examined in the ethnographic literature    to exami1.1The Philippine Department of Health’s NCD control program, known as PhilPEN  , largelyRecent legislative measures in support of lifestyle and behavioral changes have been accompanied by declining trends in smoking and alcohol consumption . In addiFurther undermining NCD management in the country has been the lack of a robust and clear referral system to higher-level health facilities and back to primary care  as well Most hypertension management studies in the Philippines have focused on clinical outcomes and the biomedical aspects of treatment and adherence, with only a few examining the social and cultural dimensions of hypertension care . We argu22.1This study was conducted as part of the (details omitted for blind reviewing) project, which examines ‘patient pathways’, and barriers to hypertension care in the Philippines and Malaysia using mixed-methods . In this2.2We draw on 71 semi-structured interviews with hypertensive individuals . The first and second authors conducted the interviews, which lasted from 45 to 60 min, in Filipino  and focused on people’s illness narratives, perceptions of hypertension, and experiences with the health care system. In the period between the initial and follow-up interviews, respondents were asked to complete digital diaries using mobile phones to track their lived experiences of hypertension for a year. In doing so, we hoped to capture information on their everyday lives and on the social, economic, and cultural factors that could affect their care journeys. Digital diary entries were stored, accessed, and managed by the researchers using a secure web-based platform that allowed concurrent analysis. It is important to note that participants engaged with the digital diaries at low levels and did not provide the in-depth narratives expected by the researchers. The majority of the digital diaries contain only nominal responses about hypertension symptoms and treatment. This is likely related to the largely asymptomatic nature of hypertension, which limited the participants’ physical experience of the illness. Also, many did not perceive hypertension to be a serious or chronic condition requiring constant attention, partly reflecting local conceptions of the condition . FinallyAll interviews and digital diary entries were transcribed in Filipino and translated to English, given the international composition of the research team. The first author led this process with the help of other local research team members and worked with the other co-authors on conceptual framing and coding. For the first analytic step, the first and second authors used the original Filipino transcripts to characterize the therapeutic itineraries of participants using the emic  perspective. Guided by principles of grounded theory , the intEthical approval for the study was granted by the London School of Hygiene and Tropical Medicine Observational Research Ethics Committee and the University of the Philippines Manila Research Ethics Board Panel 1 (Ref: 2017-481-01).Written informed consent was provided by all participants before our data collection.33.1‘Therapeutic itineraries’ see  begin at‘mataas ang presyon’/‘presyon’ , a national conditional cash transfer program of the Department of Social Welfare and Development for indigent families that includes monthly health check-ups of recipients. We also identified several participants who were ‘unaware’ of their condition , but who still engaged in preventative self-care as they were not yet experiencing any symptoms.Incidental diagnoses of hypertension, on the other hand, were obtained in several ways, including routine company check-ups, casual consultations at health centers, and instances where a family member measured the participant’s blood pressure or brought them along to a clinic. Some respondents were screened for hypertension because of membership in the “There were no signs. I was provided with medicine, but I didn’t take them…. I sold it to others who like to take medicine instead”. After several years, he developed bodily symptoms associated with hypertension, sought medical attention, and by the time of the interview had accepted his clinical diagnosis of hypertension. He reported taking antihypertensive medication at the time of the interview but also confided that he intentionally stopped treatment when symptoms subsided due to concerns about side-effects which he had heard about from others.Narding  who was initially diagnosed with hypertension during a company check-up, was not convinced of his diagnosis mainly because he had not experienced bodily symptoms: “Nothing. I just brushed it off. Sometimes you get ‘high blood’, you get ‘low blood’. But that day during the survey, I didn’t think I had [high blood] pressure. There was nothing. I wasn’t feeling anything.” After a year, during his follow-up interview, he shared: “I haven’t had any check-ups yet, even now because I don’t feel anything. And, I don’t have the time yet because I need to work. It will just be an interruption. Besides, my only concern is body pains, and I take mefenamic  for that.”Most participants who were ‘unaware’ of their hypertension at the initial interview did not report initiating any types of formal care during their follow-up interviews or digital diaries and only practiced self-care. In addition to the absence of symptoms, these participants mentioned that they were too busy with work to seek consultation. Fred, a 61-year-old farmer from Quezon Province, shared during his initial interview that the lack of symptoms was the reason for deciding not to seek care: In the following sections, we discuss the factors underpinning people’s therapeutic itineraries for hypertension, namely the temporal dimension of hypertension, people’s social relationships and their socioeconomic realities, and how these influence provider choice.3.2“just comes and goes”, which led them to either unintentionally or intentionally discontinue their prescribed medication because they felt better – even despite having been given medical advice on the importance of regular and continuous adherence. The sporadic booking of follow-up appointments and the resumption of regular medication and blood pressure monitoring were usually prompted by the recurrence of persistent and/or extreme bodily symptoms.Once individuals were clinically diagnosed, many initiated regular treatment through frequent blood pressure monitoring and by taking the medication regularly as prescribed. Eventually, they managed their condition intermittently contrary to medical advice. In their explanations for this intermittent approach, they alluded to the asymptomatic nature of hypertension and to their non-chronic and time-bound view of the condition, an illness that “I was experiencing headache and nape pain. I went to the health center and my blood pressure was checked by the BHW. It was 140 [mmHg]. The BHW told me to get maintenance [medication]. But I didn ’t take them … because it’s natural. High blood pressure happens … and ‘maintenance’ means I have to maintain taking it, right? I don’t want that. I don’t want to take medicine because eventually, I will forget about it. Besides, sometimes it’s there, but eventually, it will disappear.” Nancy  echoed the same belief about the inevitability of hypertension and its curable and non-chronic nature: “That’s just normal in life. It can happen as you grow older. If you can fight it off with a diet that’s better because then it will not come back.”As illustrated in “That’s why I am like this now [laughs]. I am paralyzed because I was not able to take the medicine regularly, sometimes I stopped. I used to forget and sometimes when I feel ‘high blood’ back then my body was able to manage. So now, I really take my medicine now every day. It’s important. Both in the morning and afternoon.”A few participants reported how their condition was rapidly followed by a stroke, despite having regularly adhered to their antihypertensive medication regime; while two participants on the symptom-driven diagnosis pathway experienced a stroke after adhering only intermittently to their prescribed treatment. Julian  shared, 3.3We found that participants’ social relationships were entangled within their therapeutic itineraries, which participate in the co-construction of care trajectories, reflecting the relational and social aspects of the disease experienced by those with chronic conditions . Partici“I have a history. My father had a stroke back then, and you know, most of us in the family were involved in taking care of him, especially us, his children. He also has ‘high blood’. So, my wife usually checks my blood pressure, then all of sudden I was getting high blood pressure readings – 140, 150 [mmHg]. So, I thought to myself, ‘this is strange’ and ‘this might be something serious’. But I wasn’t feeling anything. My wife also urged me to get a check-up with a doctor.”Dennis a 64-year-old farmer in Quezon Province shared, “I am also afraid, you know, of the possible complications from ‘high blood’. I know it can be difficult. My father, mother, and siblings had strokes. So I learned how to occasionally check and monitor my blood pressure.” This prompted her to try a medication suggested by one of her peers that cause undesirable side-effects, which contributed to her decision to finally see a doctor.Daisy, a 42-year-old homemaker in Quezon Province with hypertension for 5 years, shared a similar experience of how she discovered her high blood pressure in the absence of bodily symptoms, “I really monitor myself for my children. I don’t want them to experience what I went through when I was taking care of my parents who were also ‘high blood’. And now I am taking care of my brother who has it too and had a stroke.”Indeed, family members (particularly spouses and children) and social networks play a prominent role throughout the therapeutic itinerary. For instance, they reminded participants to take their medication, collected free medicine from health centers on their behalf, and encouraged them to seek clinical care or pursue self-care. Also evident is how participants’ children can take charge of their parents’ health expenses and decision-making, becoming key actors in their ‘therapy managing group’ . When ch“I really think regular medication is important. It’s not just for me, but also for my kids. What will happen to them in case, you know? So, I try to take the medicine regularly. But honestly, I keep on forgetting.”Daisy  shared similar insights: 3.4After diagnosis and treatment initiation, the inconvenience of traveling to seek care and long waiting times at facilities led participants to make trade-offs, posing a threat to achieving optimal hypertension management and control. For instance, these trade-offs included prioritizing work over going for check-ups or laboratory examinations. For those with day jobs, clinic hours and doctors’ availability did not typically align with their periods of free time. Participants also reported that free medication for hypertension, collected monthly, was not always available at health centers. This led some either to a pattern of intermittent adherence or to incur out-of-pocket expenses to purchase their medication from private outlets. When asked about the financial burden posed by such medicine stockouts, many shared that the impact was small as they only purchased a few tablets at a time to last for 1–2 weeks, but that doing so could also result in intermittent adherence.“I stopped with my medicine for a month now. I now grow ‘serpentina’ leaves at home and make tea out of them. I feel better with herbal.” In subsequent exchanges with her by phone, she added, “The herbal is readily available at home, which is more convenient for me because I can’t find the time to go to the health center for the free medication and they are only open on weekdays. My free time is on weekends.” Other participants had similar reasons for shifting to a different therapeutic strategy, alluding to convenience factors as reported in their digital diary entries and follow-up interviews.Moreover, many of our participants alluded to the role of convenience in continuing care. For example, Marie shared in her digital diary, Many respondents also recognized the importance of regular medication but were ambivalent about its ongoing and long-term use. They shared concerns about the possible side effects and the possibility that their bodies could get “used to” medicines. As a compromise, some of them deliberately took medication breaks and/or shifted to herbal remedies periodically. Others used herbal remedies concurrently alongside conventional medication to counter possible side-effects from the latter. Participants viewed their conventional medication as a commitment that can be renegotiated when any hypertension-related symptoms subside, which itself is based on the belief that they are able to assess the needs of their own bodies. In addition, younger participants felt that regular medication may not be necessary, saying that their bodies were capable of ‘withstanding’ hypertension symptoms. Meanwhile, others have shared the belief that regular hypertensive medication can be excessive at times and can lead to ‘low blood pressure’, which was yet another reason to suspend pharmacotherapy. Clearly, people’s concerns about medication and their sense of agency in deciding what they perceived as best for their bodies influence their decisions to either engage or disengage from the formal care process.3.5In both urban and rural settings, participants’ choice of health facility when deciding to seek care was primarily influenced by convenience, in terms of their time, budget and distance, given that most work daily. Most used local health centers because they offer free primary care services and are present in every barangay , even though they frequently experience long waiting times. For those with sufficient financial resources to pay for and/or social capital to readily access private sector care, only distance was the primary factor when choosing their preferred provider.Valenzuela City, our urban study site, had more and a wider variety of health facilities available to choose from. Aside from the barangay health centers and public sector hospitals, private clinics, hospitals, diagnostic centers, and pharmacies also offer primary care services. Facilities in neighboring areas within the Metro Manila region were also accessible. In contrast, fewer and only public facilities were available in our rural sites across Quezon Province, where participants who were able to access private care must travel one to 2 h to reach their preferred provider. In Quezon, municipalities typically operate a single tertiary hospital, apart from one island municipality included in our study where our participants must travel by boat to the mainland for specialist and emergency care.As for the use of traditional, complementary, and alternative medicine options for hypertension, there were no clear differences between the rural and urban sites. Many participants occasionally relied on herbal remedies to manage their hypertension, and the choice to do so tended to be influenced more by popular culture and knowledge, rather than through consultation with folk healers. Also, hypertension was perceived by most as a condition best treated by practitioners of biomedical, rather than traditional, medicine, even among those who used both modalities.4Our findings demonstrate that therapeutic itineraries — shaped by people’s own lived experiences, understanding of care, and beliefs about what constitutes hypertension, rather than being organized according to categories that stem from the structure of the health system — diverge from clinical pathways. People construct their own systems of care in ‘cooperation with’ bodily symptoms and significant others, both playing an important role in movements along their illness trajectories. ‘Diagnosis’, for instance, can be seen as a natural first step in a clinical pathway and a beginning of a journey; but even prior to any engagement with the health care system, the ‘pre-diagnosis’ phase features a number of health-related decisions and actions targeted to prevent, treat and manage their high blood pressure, characterized by experiencing bodily symptoms. This is consistent with earlier studies on care pathways and therapeutic itineraries , whereinClearly, one of the challenges in addressing chronic NCDs is their relative ‘invisibility’: that is, they are oftentimes barely perceived by people because the onset and magnitude of their symptoms are not dramatic compared to acute and infectious diseases . ConsequOur findings point to a confluence of factors that influence people’s therapeutic itineraries for hypertension resulting in different ways of obtaining and maintaining control in hypertension. People’s ‘lay physiologies’ are among the primary drivers of their ways of seeking control. In our previous study, we identified how the folk physiology of hypertension that rests on the local understanding of changes in blood and blood flow attributed to genetics, stress, heat, and diet, contributed to the fluctuations of blood pressure . This prNonetheless, despite the perceived active role of our participants in deciding the best course of treatment for their bodies, systemic challenges also affect their ways of obtaining and maintaining control that oftentimes discourage continuity of the prescribed treatment and monitoring for hypertension, as also observed in other settings . Our stuPrimary care in the Philippines is still largely clinic-based; hence, in order to access hypertensive medication and monitor blood pressure, people must return to clinics, which may not be easy for all due to the trade-offs that people must make . While tThese study findings could help to inform the design of interventions for improving both hypertension and NCD control in the Philippines and other LMICs, and particularly related reforms that seek to make health systems more people-centered. These findings do not seek to make a case for individualized medicine; clinical pathways and guidelines are essential tools for improving the quality of care and optimizing people’s care journeys given the available resources. However, they do suggest that a robust health system capable of addressing the growing burden of chronic NCDs should be adaptive and consider the ever-changing realities of people who require care, and be able to recommend and deliver effective practices that are feasible for them to participate in. Thus, formal pathways must have in-built flexibility to accommodate the specific needs and realities of particular groups, especially those with limited time and resources; for hypertension, this might involve an integrated mix of both community and clinic-based care. Care models should also find ways to better leverage familial and social networks to enhance care quality and outcomes. Such changes likely require changes to the current paradigm that privilege hierarchy and the provider-patient relationship towards one that better accommodates the social realities of patients . Achievi5If we are to tackle the persistent problem of poor hypertension control, people’s perspectives and in particular, their logics of care, which are often not incorporated into models of care , must beBeyond the usual structural barriers, the gap between lay and professional beliefs about the nature of hypertension, one’s ability to assess its effects, and the pathways that are most appropriate to follow should be narrowed instead. This involves, in the first place, understanding local notions of hypertension, chronicity, and risk, and importantly, plotting these notions not only in terms of individuals’ engagement with the healthcare system but in terms of their broader, dynamic practices, which also include self-care and traditional and alternative medicine. Optimal management of hypertension should not be defined as adherence to clinically defined treatment with individuals regarded as mere recipients of care, but rather as involving co-production by working with individuals and communities to create a fruitful therapeutic alliance. Interventions need to span the health system and social spheres, taking full account of people’s therapeutic itineraries as well as the knowledge, experiences, and social realities that shape them.


Background: Co-morbidity is a major late-life challenge with poor outcomes, yet many older people are resilient. We consider an ecopsychosocial framework of resilience to investigate this disparity. This theorises that sources of resilience may be personal, social and structural. We explored older people's responses and reactions to significant life experiences, to understand resilience development for managing later life health challenges.Methods: We applied a two-stage, cross-sectional mixed-methods design to the Cognitive Function and Ageing Studies Wales . Participants' defined quantitatively as resilient (high level of well-being despite co-morbidity) were identified in the wave 1 dataset. A sub-sample of the resilient participants aged 65+ were randomly selected for semi-structured interviews (N = 20). Qualitative thematic analyses were both inductive and deductive.Results: The analyses revealed four primary life experiences reflecting different developmental trajectories. “Early years as formative” and “work and employment as formative” occurred at normative developmental stages in the life-course. In contrast non-normative life events such as loss, bereavement, illness of self, and others underpinned the themes of “adverse events and experiences” and “caring experiences.” Four potential mechanisms for resilience were central to these life experiences, reflecting reactions, actions, and development: “character and self-identity;” “approach to life and insight;” “meaningful relationships and belonging.”Conclusions: This work contributes further theoretical insights into the ecopsychosocial resilience framework. It highlights the process of interdependence between the individual and the wider environment, suggesting how the availability and accessibility of resources and human agency (protective factors), can influence, and be influenced by, the timing of significant events and experiences. In doing so, it corroborates international healthy ageing policy which recognises resilience as important for a public health response to support older people to adjust to changes and losses experienced in later life. It highlights the importance of current and future policies and services for supporting the management of adverse events earlier in the life-course, and recommends that policies and services take a “long view” on population health and well-being and consider the whole life-course, in addition to specific points in the ageing process. In developed nations there has been an “epidemiologic transition,” reflecting the decline of infectious and acute diseases and a growth in chronic and degenerative diseases and co-morbidity . Comorbithe process of effectively negotiating, adapting to, or managing significant sources of stress or trauma. Assets and resources within the individual, their life and environment facilitate this capacity for adaptation and ‘bouncing back' in the face of adversity. Across the life-course, the experience of resilience will vary”  one third of these children went on to be competent, confident and caring adults . Some eaRecognising that older age is shaped by prior experiences , we addrAs previously outlined, comorbidity is associated with a number of poor outcomes, and is particularly pertinent given it is increasing likely to occur as people age . Hence cN = 3,593). Participants were interviewed in their own homes by a trained researcher. The response rate was 46%. Ethical approval was granted by North Wales Research Ethics Committee West. Participants first took part in main CFAS Wales interviews during 2011–2013, administered using assisted computer direct data entry.Data and participants are from the Cognitive Function and Ageing Studies Wales . This is a population-based study investigating change in health, well-being and cognitive function in community dwelling older people (including a proportion in care facilities) aged 65 years and over living in urban and rural areas of Wales. Participants were randomly sampled from general practice lists between 2011 and 2013, with equal numbers drawn from the age groups 65–74 and 75 and above  in the face of an adversity, and no studies specifically measured positive mental adaptation and well-being, an important outcome in older age . FollowiHigh well-being was assessed with the Satisfaction with Life Scale . Five quHealth problems were defined from the methodology of Brayne et al. . We idenParticipants were required to be cognitively capable of a discussion and were included in the sampling frame if their mini-mental status score (MMSE) >21. Scores range from 0 to 30, with higher scores indicative of better cognitive functioning . DemograA topic guide contained questions to encourage the participant to think about key events over their life. It was designed to capture unique experiences without explicitly referring to the theme of resilience in the interview. To mitigate against elements of deception around the nature of the interview, at the outset the interviewer clarified with the participant why they had been selected for this study. An early draft was discussed with the research team, refined and piloted see . The semWe used a two-stage hybrid method for our qualitative analysis. First, we used the approach of IPA  to examine personal lived experience in detail, inductively interpreting how participants made sense and navigated their significant life experiences, rather than examining experience through a lens prescribed by pre-existing theoretical preconceptions . Each meSD = 7 years), 12 were female, 10 were married, six widowed, two divorced, and two had remarried following a divorce. The average life satisfaction score was 29.15 (SD = 2.39), higher than the mean of the total sample . The average number of health problems was 4 (SD = 2.0). More specifically, the number of conditions reported across the participants were angina = 4, diabetes = 9, Parkinson's Disease = 1, stroke = 3, epilepsy = 2, chronic bronchitis = 3, asthma = 2, arthritis = 14, hearing difficulties = 9, eyesight difficulties = 6, high blood pressure = 8.Thirty-eight people were identified using random sampling, 20 interviews, lasting ~1 h, were undertaken. Participants' average age was 77 years  = −0.19, p = 0.001. This remained significant for those with two or more health problems r  = −0.16, p = 0.001, but not for those with one or no health problems r  = −0.04, p = 0.12.There was a negative correlation between higher reports of health problems and lower life satisfaction for the total sample : “early years as formative;” “work and employment as formative;” “adverse events and experiences;” and “caring experiences.” Central to these experiences were the participant's accounts of their reactions and subsequent actions, how they understood and managed the experience, which we define as: “character and self-identity;” “approach to life and insight;” and “sense of belonging and meaningful relationships.” These themes reflect an interplay between their development and application in the context of the life experiences, which can be described as resources, or mechanisms for resilience . These areence see . We illuParticipants described childhood situations which shaped their subsequent lives, often in the context of material hardship from World War II and the early post-war years. The childhood perception of a family member making sacrifices was common. These experiences had a strong impact on identity development and strategies for dealing with subsequent challenges. When reflecting on her life and how she had managed her mother's manic depression, her father's Alzheimer's disease, her divorce and her own health problems , one participant remarked:I look back on the past and think, “Well how did—what did mum and dad do?”… I just feel that you just have to take whatever comes and hits you. And, just get on with it really, because there are other people relying on you…. you just [(sighs)] you know, I've always been erm (.) what is it? Half—you know, is it half—half-full. .“This illustrates the importance of role models for learning and adaptation. Early experiences of helping their parents was important for several people and facilitated independence and a sense of family responsibility:My brother, he was 2 years younger than me, we were both young boys, and we use to go and help. My father worked on the farm next to where we lived, and he use to go around with a milk cart in those days, horse. ….. He use to get up at six o clock in the morning to deliver the milk and we helped him …. In a way it taught us a great deal, it was training, to prepare us for work. .School experiences were strong influences. Some participants described school as a happy time, but others described learning to tolerate difficulties in school, an important characteristic for managing future challenges. For Welsh speaking children, communication in school was particularly challenging, when many subjects were taught in English.I learnt the things, but I didn't know how to pronounce the words properly .Despite this, she achieved in subjects not requiring the use of English, reflecting an early capacity to negotiate a complex situation for the self as a source of resilience. She indicates how these early experiences and negotiations have facilitated her subsequent approach to life despite her ill-health :Nothing has left its mark on me for long.”“Participants' early environments, although challenging, provided experiences for learning and the development of character, a resilience mechanism.very good at school,” went on to further training and then ran her own small shop from late teens to retirement. Work was important in defining her character and approach to life. When discussing how she managed the loss of her husband and her own ill-health and disability , she remarked:This theme occurred across all of the lifespan and was an important influence on identity formation and maintenance. For most, entering work was a turning point, influencing their future. One participant, who described herself as not “I suppose it's because I've always had to stand on my own two feet you know? Like having a business from an early age … you just do have to stand on your own two feet and get round everything and get on with it. You know, there is nobody to fall back on.” .“Often work was a source of pride, pleasure and enjoyment, and later on for keeping busy and maintaining continuity. One participant, still farming in older age despite his health problems (stroke and arthritis), captures this, saying:I think it would be quite dangerous to stop (.) I'm sure I'd be quite lost if I moved to a bungalow with no problems. Because I'm used to problems at work all the… Something goes wrong here every day, there's always something to do and paperwork—I'd miss that” .“Some participants were unable to enter their chosen profession demonstrated their ability to compromise and accept their situation.Well I wanted to be a nurse, but mum was so poorly so there was more than enough work for me at home” .“I haven't come to do cheap labour, I've got to get on,” . This early determination, to maximise a situation, along with compromise and acceptance reflect the development a strong sense of self and character, all important for managing sources of stress in later life. This participant reflects on the influence of his father's death on his young life:Others describe long hours in apprenticeships, factories or farms, yet needing to be valued “I was young- determined to do something with my life—perhaps my life would have been completely different had my father been alive.”“The determination fostered in early life continues into later life and how he managed his diabetes :but I was determined to know how to do it, perhaps I'm not a doctor or a nurse but I've learnt about diabetes. It hasn't stopped me, I went to hospital for a week at the beginning and I had to learn how to inject myself.”“There are other examples where learning from experiences in earlier years has enabled participants to manage later challenges. For example, this participant found out early in life that keeping busy was helpful throughout her life:Having plenty of work to do so you have to think of other people not yourself” .“Another participant spoke at length about how her earlier experiences of being self-employed helped her become the woman she now was.Things haven't been hunky-dory all the time, there have been problems.” . Non-normative family bereavements occurred in many participants' childhoods and multiple losses were extremely painful. Determination resonates. This participant, living with arthritis and the effects of a stroke, who experienced the loss of four boys from his family, remarked:Experiences of loss and pain, both physical and emotional, resonate in the narratives. “Well I don't know, as one says,.. make the best of a bad situation, when you're determined” .“This highlights how adaptive strategies that draw on personal resolve influence the experience's meaning and interpretation.The significance of an early major event resonates with another participant, whose mother died of Tubercolosis, and who also contracted the disease herself and was hospitalised as a child for 2 years. She describes her emotional response to the loss:When me mum died I thought, “Right, nothing worse than this can happen.” And then you get into yourself and think, you know, “It's my time now,” and get on with it.” .“There is a realisation that this was the worst thing that could happen to her, and “life goes on” negating the impact of subsequent major events.Many participants described the limitations brought about by their illnesses which affected them primarily in their older age. In the face of disabling arthritis, one participant remarks:I want to walk and that's it, or try to walk. You've got pain after but I know what it is. I know what the pain is, it's arthritis and that, and there's nothing you can do about it.” So why should I waste my life worrying about that?” .“One participant, who had been told in early adulthood she would be unable to have any more children, and who had significant mobility issues through arthritis in older age remarked:Well I think the thing is you just have to accept things. And if you can't accept things, you're no good to anyone are you?” .“Being determined, yet able to accept, are aspects of character which have developed and prevailed across the life course. Although there are experiences of loss and pain, character development is prominent. Those early experiences are important in positively re-framing illness in later life.Participants discussed the ups and downs of their life history. For example, this participant reports she did not cope well with a diagnosis because it impacted on her work, which found rewarding:Well I didn't cope with it in the beginning because I was working, <I worked> with the Social Services. And erm, that was what started off as Homecare obviously, and I did over 30 years service with that. Erm, and I really enjoyed my work.” (F age 69).“She reported feeling envious of friend whose health problem was resolvable whilst hers was not. These emotions hindered, for a while, her resilience:And a friend of mine now, she just had her hip done, and me being a bit jealous about that, because she's alright now. I mean I go into hospital and I'll come out exactly the same way practically.”“This final example, demonstrates how on occasion, one event contributes, in this case the death of her mother and her own hospitalization, both to the dynamic nature of resilience:No I never used to worry about anything; no I'd have enough worries when I was 10, so it doesn't bother me anymore. Nothing bothers—nothing bothers—when you lose somebody like that you're not worried about anything.” (F age 74).“This theme reflects the experiences of providing care and support to others, but also receiving care and support from families, friends and professional services. This was often initiated in childhood, with participants caring for a sick parent.And you know there was no electric lights, nothing was in them days, so I used to go down with me candle. She wanted a drink of tea which I had to make and her cream crackers. And I was thinking, “I don't mind doing this because I'll have one as well.” [(Laughs)] I always remember that. Nothing was too much to do at that age.” .“I look forward to getting up every morning and I look forward to going to me bed at night, read me papers, watch me telly and that's it, that's my happiness.” Developing the ability to identify value in less than desirable situations is an important aspect of resilience.Although a child, she highlights a positive interpretation of an adverse situation, suggesting it provided something of value to the self. When discussing later life in the face of health and mobility restrictions she demonstrates this ability to re-interpret an adverse situation, “and in doing so you know, I dealt with the situation” . This sense of purpose was a way of coping with her own loss. Family support is reciprocated across the generations, with older parents supporting their younger family members when experiencing earlier difficulties and can be interpreted as family resilience. This participant illustrates this from young adulthood:Giving care also enabled the focus to move away from participants' own problems. In early adulthood, in the face of her own grief at her mother's death another participant describes how she thought her father needed more help “I got married when I was twenty four, I had a daughter when I was 25, then I had two other children close to each other, and then my brother died when my children were quite young.…. I was 9 years older than him, so I used to look after him a lot I suppose. And later:. Later, when talking about her rheumatoid arthritis and osteoporosis she says:Participants described their reactions to experiences and how they felt they dealt with them, particularly when faced with significant challenges. Tolerance and acceptance were common, suggesting that well-being was maintained in the face of challenges, particularly in later life, drawing on these characteristics. This woman remarks, when describing her hard working life in her teenage years, “I didn't ask for it to come, you can't take it away so I've just got to adapt to it. I can't do things that I would like to do, I just can't do it but I'm not sitting worrying about it. They tell me when I first was diagnosed with it they told me to walk about as walking gets oxygen into you bones. Well I've walked but it's not happening like it should and I can't do anything about it so it's there and I just have to live with it.”“This draws attention to the continuity of aspects of character such as tolerance and acceptance despite challenges.I dunno now, as I say, it just always been drilled into me, you just gotta do it and get on with it. … just determination.” . As she retired, she also lost her husband, yet notes “I don't know, I suppose I just got on again really (.) just pick yourself up and carry on?”Determination, as already noted, is explicitly referenced across life-course experiences. This is illustrated by this participant: “Always somebody worse off. But I remember saying that to the consultant and he said, ‘Yes, but it doesn't help you, does it?' I said, ‘It helps my mind.”' . This attribute enables a re-appraisal of the situation, again underpinning continuity. There is an intrinsic need to either maintain or restore equilibrium, to preserve the self.Despite their own difficulties, comparisons with others enables participants to provide a different perspective “Participants displayed several characteristics which appeared to facilitate successful psychological adjustment. This draws attention to a recognition of knowing that life will contain events that could be considered less than desirable, and a need to draw on the self to turn this into something that can be managed and avoid or reduce the impact.just not think about anything—just live for today and not think about tomorrow” —reflects an important perspective for managing the self when faced with very difficult ill-health. This also reflects a temporal aspect, a focus on the present-time in later life, which is further articulated “you have to deal with things, if you don't, then you make life miserable for the children, don't you. And this and the other, you have to cope with things as they happen . Not worrying too much and having a positive outlook featured as an important perspective when faced with challenges “Hard work doesn't kill anyone. It's worry that kills people.” .The characteristics inferred from the participants' narratives were important in understanding how they dealt with their concerns and reactions to events over the life-course. This approach to life involved their understanding their situations, and actively managing them. Focusing on the present—“Keeping active and occupied was seen as important. In discussing his brother in law's death 1 year after retiring, one participant describes his understanding of this early death:He stopped working you see, he stopped doing what he used to do, it's unwise for anyone who's used to working to stop like that. It's better if you look for something to do, it doesn't matter what, even if you do voluntarily without any pay” .“well if you stay at home, you'll only get depressed” . Religion was important for many participants both for staying socially connected and providing meaning for life events. In discussing his mother's death, one participant notes “Other people came to offer their sympathy and so on but there was something that was part of me that helped me. I can't explain, it was my belief that helped me most.”  and she couldn't move. That shook us all but then you have to carry on when you have three children, you just had to, there wasn't any choice.”“This earlier observation was reflected when talking about her own health difficulties :I'm better than I've been for a while, I can move better, much better than I used to. One of my friends for example, she doesn't see anyone all day long where she lives, so she's [decided] to move to a home. I don't understand [her], I'll keep going until I can't cope any more, for example, if I couldn't move, but while I can move I'm staying here, I'm staying put. [(laugh)]”“well I don't know, I don't know how we got through it. We supported each other” . Participants described family as important in times of crises. Family responsibility, having family members to look after, experiences of having been looked after as a child all motivated ongoing reciprocal exchanges of support.Participants discussed their connections with friends and family, set in the contexts of the broader importance of attachments to the home and the locality for feelings of cohesion. For all participants, despite experiences of loss and hardship, family attachments are important: relationships between parents, siblings, children and spouses are an important resource for support. In describing the family's response to the early death of her young nephew, one participant captures this, saying “as you get older, it's good to have someone your own age that you can talk things over with” . Others had friends and neighbours who they felt would provide practical support if they needed it, as one participant notes,Broader friendships in the community were also an important resource for emotional support and sharing problems “I got the bug 1 day and I didn't go out, and they noticed that my car hadn't moved from here, and they phoned to ask, ‘are you alright?' ‘yes'. So they would help you, I fell and hurt myself once, and [Friend] came over to ask ‘what do you want?”' .“As with family relationships, reciprocity was part of friendships, facilitating ongoing exchanges. The same participant describes how her neighbours call on her for help.They turned to me the other day, one of the girls was ill and (neighbour) came here, can you come over, isn't well.”“there isn't much of a community now.”  reflects the changing nature of local life that resonated in older age.However, “A sense of belonging through connections to communities, meaningful relationships within and between friends and family within these communities and beyond, provides an important resource for support at times of need, but also through providing support to others, enables reciprocal exchanges to continue to feel valued and needed, facilitating individuals to be resilient in the face of chronic health conditions.We explored how life experiences influenced the development of resilience, by interrogating narratives of significant events or stressful experiences in the life-course and how these were managed, to understand the meaning of those experiences. The study focuses on the experiences of resilient older adults, as indicated by high life satisfaction despite facing adversity . The results yield important insights from a life-course perspective to understand resilience. Fundamentally, we suggest that later life resilience is determined by both normative and non-normative experiences that influence the development of resources, which we term “resilience mechanisms.” Two of these mechanisms can be seen as individual factors of the ecopsychosocial model: character and self-identity; and approaches to life and insight. The other two mechanisms reflect both community and societal resources: a sense of belonging and meaningful relations. In turn, these mechanisms potentially determine the impact of subsequent challenges, illustrating resilience as a dynamic process, and contesting perspectives which argue that resilience is inherent in the “self.” Collectively our findings provide support for the ecopsychosocial resilience framework, as participants drew on personal, social and structural aspects, highlighting the interrelationships between the individual and their wider environment.resilience should be seen as a contextualised process which can be both individual and environmental” (p. 416). Wild et al. ]Quantitative research has shown resilience is important for maintaining well-being in the face of chronic illness , reducinWe thought carefully about the design of the qualitative aspects, using a transparent and consistent approach to research design and conduct, derived from a framework for excellence in qualitative research . NotableThere are two limitations in our design. First, it is retrospective, and one could argue that our participants are looking back through “rose-tinted glasses.” However, there are two counter arguments to that. By using a life-course perspective in a time-unlimited interview we are giving participants the opportunity to reflect on their lives, and our experience elsewhere suggests that positive response sets are less likely in those situations . In addiWe are also unable to say whether their hardships were objectively normative or non-normative. Given the age of our cohort, many people who were born at this time would have experienced similar levels of hardship in the war and post-war years. One might argue that our participants had experienced enough stability to provide the foundations for resilience. To address this question, we would need to examine the life-course of non-resilient participants.Our work is important for its contribution to four areas: method; theory; knowledge; and application. The study has a distinctive mixed-methods approach with a strong sampling approach. Uniquely, we drew our qualitative sample from a large panel dataset, using classical sampling methods. Our sample comprised older people who had high levels of life satisfaction despite facing significant health challenges. In addition, the interview was novel in two ways. First, the interview followed a life course perspective, whilst second, avoiding explicit questions about resilience. Thus, our findings reflect non-primed responses. The study provides an important contribution to the theory of resilience and the development of resilience. It demonstrates the importance of resources at individual, community, and societal levels to the development of resilience across the lifespan. Our findings highlight the importance of both normative life events such as early years and work, and non-normative events such as adverse life experiences , and caring experiences, on the development of resilience for older people. The results also provide insight into the mechanisms which facilitate resilience. Collectively, these findings demonstrate how the availability and access to the resources interact with the timing of significant life events and experiences to facilitate  resilience. Finally, the implications of our work provide some early indication that it is not only important to take a forward view when thinking about service provision and ageing well, but also a long backward view. Understanding the life experiences of older people is essential if we are to provide appropriately tailored services and resources for older people that they consider appropriate and are willing to use.The datasets generated for this study are available on request to the corresponding author.The studies involving human participants were reviewed and approved by North Wales Research Ethics Committee West. The patients/participants provided their written informed consent to participate in this study.GW and KB were CFAS Wales co-investigators. GW designed the qualitative sub-study, developed the topic guide, oversaw the data collection, and led the writing of the manuscript. KB contributed to the writing, editing of the early drafts, and manuscript. CM contributed to quantitative data collection, oversaw the qualitative data management, and contributed to the writing of the final manuscript. All authors developed the coding system, undertook data analysis, and interpretation.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.