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Section 4 - Translations in Policy and Practice

Published online by Cambridge University Press:  20 June 2024

Michelle Pentecost
Affiliation:
King's College London
Jaya Keaney
Affiliation:
University of Melbourne
Tessa Moll
Affiliation:
University of the Witwatersrand
Michael Penkler
Affiliation:
University of Applied Sciences, Wiener Neustadt

Summary

Type
Chapter
Information
The Handbook of DOHaD and Society
Past, Present, and Future Directions of Biosocial Collaboration
, pp. 185 - 230
Publisher: Cambridge University Press
Print publication year: 2024
Creative Commons
Creative Common License - CCCreative Common License - BY
This content is Open Access and distributed under the terms of the Creative Commons Attribution licence CC-BY 4.0 https://creativecommons.org/cclicenses/

Chapter 16 Translating Evidence to Policy The Challenge for DOHaD Advocacy

Felicia Low , Peter Gluckman , and Mark Hanson
16.1 Introduction: DOHaD over Two Decades

Maternal, newborn, child, and adolescent health (MNCAH) is clearly established to be a driver of health across the lifecourse and generations [Reference Godfrey1]. It is now 20 years since the founding of the International DOHaD Society, based on the research themes of the Fetal Origins of Adult Disease (FOAD) established by David Barker and others at the end of the last century. From its inception, Developmental Origins of Health and Disease (DOHaD) research largely focused initially on metabolic control and the major organ systems, such as cardiovascular, lung, and kidney; it also focused on pathophysiology rather than on normal development. It took some time for the incorporation of phenotypic variation in normal development to be recognised as part of the continuum of adaptive and maladaptive developmental plasticity [Reference Bateson2, Reference Gluckman, Hanson and Buklijas3]. Similarly, the field has been slow to recognise that the same conceptual paradigm applied to the effects of developmental processes on brain development and socio-emotional health – with effects in the short term on infant and early childhood neurocognitive, emotional, and behavioural development – and then on school readiness, educational attainment, employment prospects, and wider contributions or costs to society [Reference Low, Gluckman and Poulton4, Reference Moffitt, Poulton and Caspi5]. [See also Cohen in this volume.]

Research in DOHaD accords with other agendas that have developed in parallel over the last two decades, such as The First 1000 days and Best Start to Life [6, 7]. It is referred to in the 2011 UN Political Declaration on the Prevention and Control of NCDs [8], the 2015 Global Strategy for Women’s, Children’s and Adolescents’ Health [9], and the 2016 report of the WHO Commission on Ending Childhood Obesity [10]. From this point of view, it could be argued that DOHaD has already been translated to inform policymaking at an international level. However, it has only been referred to in very general terms rather than indicating or identifying specific interventions, and so it has not influenced policymaking significantly. Even the lifecourse concept that underlies DOHaD has not been widely adopted within health policies, for example in Europe where a specific review was commissioned [Reference Jacob11].

Although the epidemiological observations of Barker and other researchers in FOAD and DOHaD initially focused on high-income countries (HICs), it was clear from the outset that the insights into the impact of early development on later health and disease would be even greater in low-middle-income countries, especially as their societies passed through nutritional and economic transitions towards aspects of HIC lifestyles [Reference Popkin, Adair and Ng12]. From this standpoint, much of DOHaD thinking was reflected in the Sustainable Development Goals (SDGs; e.g. Target 3.4 that aims to reduce by one-third premature mortality from NCDs by 2030). Again this was largely aspirational and not linked to specific actions. Since 2015, many additional challenges to health have arisen globally, in particular those stemming from the COVID-19 pandemic, continuing food insecurity, the accelerating impact of climate change and environmental degradation, and conflict and economic factors leading to large-scale migrations. The midterm evaluation of progress towards attaining the SDGs shows that insufficient progress has been made [Reference Moffitt, Poulton and Caspi5] and most areas of MNCAH have even deteriorated [13].

An aspect that is only now receiving significant attention concerns the ethical, moral, and social justice arguments for advocating greater policy focus on the application of DOHaD science. (See Chiapperino et al. and Kenney and Müller in this volume.) Many forms of disadvantage are passed across generations in multiple ways, and this raises questions about individual and societal responsibilities to protect the environment and the health prospects of future generations. DOHaD research has extended our understanding of intergenerational disadvantage, including the biological mechanisms by which environmental influences can project across generations to have significant implications for their future well-being. Examples of these mechanisms include having a shared nutritional environment [Reference Dalrymple14], microbiota transfer [Reference Calatayud, Koren and Collado15], and the influences of maternal mental state on offspring brain development [Reference Meaney16]. Epigenetic processes may play a role in embedding these intergenerational embodiments of disadvantage [Reference Scorza17].

Maternal, newborn, child, and adolescent health is particularly vulnerable to the detrimental effects of challenges faced by societies, as is clear from the effects of COVID-19, climate change, and conflict, all of which are known to exacerbate pre-existing inequalities in MNCAH. Examples from COVID-19 include unplanned pregnancies resulting from lack of access to contraception, missed child vaccinations, teenage girls dropping out of school, and domestic violence [Reference Krubiner18]. DOHaD insights therefore provide an understanding of how the bedrock of social and economic resilience of societies to such challenges, now and in the future, can be undermined, and make a powerful argument for greater investment in MNCAH during socio-economic shocks [Reference Jacob19].

The UN Global Strategy for Women’s, Children’s and Adolescents’ Health (2016–2030) states that economic investment in this area will yield a tenfold return [9] (but see the chapter by Cohen in this volume). This argument is based on the long-standing work of the Nobel Laureate in Economics Professor James Heckman and his team; even so there are compelling reasons to think this may be an underestimate [Reference Caspi20, Reference Richmond-Rakerd21].

For these reasons, DOHaD researchers need to equip themselves to argue that their research and concepts should inform health and wider policymaking. To a great extent, this has not happened. Here we discuss why.

16.2 Understanding the Role of Scientists in Policymaking

Translating scientific knowledge and evidence into policy is far from straightforward. Science alone rarely makes policy; there are always considerations that extend well beyond the ambit of science and that mostly lie with policymakers and society [Reference Cairney22, Reference Gluckman, Bardsley and Kaiser23]. While science itself is not value-free, many other value-based considerations influence decision-making. All policymaking involves making a choice (including whether to act or not), and in making such choices, decision-makers must assess which stakeholders benefit from a decision, and which do not. This is core to the political dimension of policymaking [Reference Gluckman24].

Science has its own distinct cultures, methods, and epistemologies and is not simply a matter of assimilating ‘facts’ universally agreed by researchers [Reference Latour and Woolgar25]. Even though it may be badged as objective, in reality science too involves value judgements, for example over what questions to investigate and how to do so, and especially over the sufficiency and quality of evidence from which to draw conclusions [Reference Douglas26]. Such values – which may vary between disciplines, research teams, or institutions – shape the knowledge about which there is consensus. Policymakers also have their own cultures and values, which are likely to accord more closely with wider social values than with those of scientific researchers. Faced with this potential gap, there is increasing recognition of the need for boundary structures and processes to broker the interchange between science and policy [Reference Gluckman, Bardsley and Kaiser23].

Scientific data, however robust, do not equal information, or the knowledge and evidence that policymakers will accept as sufficiently important or compelling to necessitate a potential policy initiative. Moreover, policymakers have many sources of information in addition to that from scientists – tradition and beliefs, local knowledge, anecdotes, and the personal representations made to them all the time by a range of stakeholders or ‘experts’. Science is but one source of such information, and when it is constantly contested, by scientists themselves as well as other constituencies and wider dissemination of misinformation, its impact is diminished. Scientists should not put the policymaker in the position of being a scientific referee as this will lead to uncertainty and inaction [Reference Gluckman, Bardsley and Kaiser23].

It is therefore more important than ever for scientists to understand how policymaking works, recognising that it is not a linear process and does not necessarily have clear or straightforward objectives. It is usually shaped by acute external factors, as well as by political and societal values. In addition, politicians increasingly must make decisions on a very short timescale, perhaps even a few days for major issues, with suboptimal information and little opportunity to consult experts. They are unlikely to be trained in scientific methodology. They will have to depend on input from civil servants, who may have considerable experience but who may also bring their own agendas and reflect departmental priorities.

Policymaking is thus essentially about making choices between different options that affect different stakeholders in different ways, and with different consequences, many of which are not certain. Virtually all policymaking involves complexity, uncertainty, and a degree of risk. But perceptions of complexity and risk vary, not only between scientists and policymakers but also between government departments too: a policy that seems to carry a low risk for the treasury may have an unacceptably high risk for a defence department.

The so-called ‘policy cycle’ almost never operates as is sometimes suggested in textbooks, and perhaps it never did except in the minds of theorists [Reference Cairney22]. The cycle (awareness raising > problem definition > identification of options > policy selection > implementation > evaluation) is manifestly cumbersome and time-consuming and requires consensus and concerted action across government departments. Getting beyond the mindset of the policy cycle first requires recognition of the complex nature of policymaking and ensuring that awareness-raising by scientists addresses what policymakers need.

There are two distinct components to translating evidence to policymaking: evidence synthesis and evidence brokerage. Evidence synthesis must be much more than a narrow summary from a single field of science. It must be pluralistic and consider all the domains that might impact on achieving a policy goal and the questions that will matter to a policymaker (e.g. direct and indirect impact, effect size, and so forth). Evidence brokerage requires individuals who are skilled in the language and needs of both the policy and scientific communities and are able to translate between them. This requires what has often been called honest brokerage [Reference Pielke27]. The basis of effective brokerage is being clear about what the science shows, what questions it does not answer, and what options emerge from it [Reference Gluckman, Bardsley and Kaiser23].

Problem definition by scientists does not help the policymaker. They expect the science community to present solutions they can enact. So when problems are presented they must be accompanied by solutions that are scalable, impactful, and supportable both ideologically and by a broad range of stakeholders [Reference Cairney22]. In general, this favours attention to problems that have an identifiable single solution rather than a complex and complicated set of potential solutions. Yet, DOHaD science is unlikely to deliver simple single interventions with significant impact; rather it indicates the need for a broad shift in attitude and priorities within the policy and political community. A further complexity is that while interventions must be early in the lifecourse, the economic return accumulates over many subsequent decades [Reference Caspi20, Reference Heckman28, Reference García29]. Indeed, as has been suggested in areas such as climate change, issues where the return is in the distant future are unlikely to secure urgent political attention [Reference Gluckman and Bardsley30]. This is not helped by the use of discounting in economic forecasting [Reference Hepburn, Atkinson, Dietz and Neumayer31], which argues against the deployment of funds to address long-term objectives, especially those affecting the beginning of life.

16.3 Translating DOHaD: What Do Policymakers Need from Scientists?

Any solution to a problem presented to policymakers must be based on a high degree of scientific consensus. This is seldom the case; scientific research by its nature competes for funding and recognition. Thus policymakers will be justifiably suspicious if the suggested solution is simply a disguised request for more funds for an area of research.

Even where there is consensus within the scientific community, it must still be presented to policymakers without hubris, condescension, or alarmist speculation. Wherever possible, economic and societal-value considerations of the proposed solutions need to be included, but again these should not stray beyond evidence. The gathering of such evidence may require participatory research, for example with a population or patient group, but this is time-consuming and raises its own methodological problems, especially where children and adolescents are concerned. (See Tu’akoi et al. in this volume.)

DOHaD science in many ways has not matured to the point where this participation has been achieved. Nor has the scale of the solution to the problem it encompasses been adequately defined. For example, while it is widely accepted that the risk of later NCDs has in part its origin in early life, and while there is no dispute that over 70 per cent of deaths globally every year result from NCDs [32], the contribution of DOHaD processes to the risk, vis a vis unhealthy lifestyles in adulthood and genetic variation, is not really known. This needs to be addressed if future advocacy is to be effective. At present, the strongest advocacy for DOHaD involves the counterfactual, based on untestable assumptions; that is the health and financial cost of inaction rather than the benefits of action.

DOHaD is a multidimensional issue, so interventions to address it will be complex. However, there is a lack of compelling research showing the benefit of such interventions. Rather, based on the evidence to date, a likely programme of intervention would involve a diffuse set of recommendations for preconception health for both parents, pregnancy management, nutrition, and nurturing care for the early years. Recommendations involve in part changing individual behaviour and in part structural issues concerning inequality and intergenerational disadvantage; these are holistic issues that challenge all governments and societies. There are no good precedents on which advocacy can be based.

DOHaD science will inevitably suffer from the fact that it advocates for preventive measures to address future burdens of ill health. Policymakers are not likely to act on prevention measures other than vaguely agreeing that ‘prevention is better than cure’ [Reference Cairney and Denny33]. Because the benefits of an intervention based on DOHaD science will accrue at some point in the future well beyond the duration of an electoral cycle or two, it is unlikely to convey any sense of urgency. For this reason, DOHaD advocacy needs to encompass the short- (e.g. pregnancy outcomes and socio-emotional health in the preschool years), medium- (educational attainment, adolescent health, and well-being), and longer-term (NCDs) implications of its evidence.

A first question policymakers will inevitably ask when presented with the evidence for a solution will be the following: given all the competing demands on resources and the interests of a range of stakeholders, do they need to do anything about it and, if so, when? As in other areas of advocacy for a cause, the evidence behind the message is only one aspect of the process; at least as important can be who is conveying the message and how it is framed. Clearly DOHaD needs to employ its most influential spokespersons, but it also needs to couch its messages in terms of other policy issues that are relevant, such as climate change, the impact of pandemics such as COVID-19, economic development, and ongoing conflicts and migration. Each of these has detrimental effects on population health and economic consequences, and each raises questions of equity and social justice [Reference Penkler34Reference Campbell-Lendrum and Corvalán36]. There is a strong argument that each of these challenges has the most pronounced short- and longer-term effects on MNCAH, and therefore insights from DOHaD research could be highly relevant to mitigating such effects.

It has to be recognised that most advocacy-based approaches to policymakers fail. Persistence and reshaping the brief with relevant influential stakeholders therefore need to be the key aspects of the process, built in from the start. It can be helpful to ensure that a multiple streams theory approach is adopted, by which the domains or streams of problem, policy, and political components are included [Reference Kingdon37]. It may then be necessary to wait for a window of opportunity to open, for example as a result of external events, which makes a change in policy desirable, necessary, or appropriate, so making reception of an advocacy approach more likely to be positive. Successful approaches usually involve a collaboration between and consensus among a range of groups. Therefore, DOHaD advocates need to work with allies and form allegiances in ways that have not been undertaken to date. Even more important is to work towards providing advocacy for ‘the right intervention at the right time’. In practice, this means considering how a particular policy initiative might align with other ongoing initiatives. Spillover benefits may be critical, for example plans to address childhood obesity may have benefits for educational attainment.

While DOHaD has a broad agenda and relevance globally, nonetheless from a practical point of view any advocacy initiatives must be relevant and deliverable at a local level. This may involve comparisons between populations or regions and perhaps include accountability for previous commitments. DOHaD advocacy needs to link to ongoing initiatives and be locally adaptable as well as globally relevant.

16.4 An Alternate and Complementary Approach: Devolved Solutions

DOHaD science effectively argues for a greater focus on the state of the parents before conception and on the support of the parent and infant in multiple ways through and after pregnancy, in the expectation that the offspring’s potential through life will be protected or enhanced. Indeed, many of the later costs to that individual and to society are predictable from the age of about three [Reference Moffitt, Poulton and Caspi5, Reference Moffitt38]. But the interventions needed are complex and context dependent. What might be appropriate in terms of nutritional advice for a family in a high-income country is not the same as that needed in a country where food insecurity is endemic. And even within a high-income country, there will be large foci of nutritional deficiencies within some components of the community. Further the very nature of the DOHaD challenge requires a multilateral approach that is both universal and targeted. For example, to focus on nutrition and not to consider emotional stress would be unlikely to improve outcomes significantly. That said, the DOHaD agenda aligns with wider issues of great concern, such as environmental despoliation and climate change, the impact of climate change, COVID-19, and the current cost of living crisis [Reference Mahase39].

It is difficult in the current state of DOHaD knowledge to get beyond the conclusion that most progress will be made through local action. Certainly, this needs government support, but communities are in the position in many places to identify needs and to take action. However, this requires a new form of partnership with the science community, one that is meaningful and involves, codesign, respect for lay input, and a long-term commitment. This type of action-focused transdisciplinary research is neither easy to do nor easy to fund. It requires researchers to get out of their comfort zones, and it requires a commitment to long-term engagement, which in turn does not fit well with traditional academic incentives. Building trust with a community, adjusting scientific ideas to local knowledge and expertise, and through a local cultural lens can require sustained commitment before anything concrete can be planned. Many issues here outside the scope of this review are discussed in this handbook and elsewhere [40]. Yet if the DOHaD community is to see its knowledge turned into action, local engagement offers a productive and rewarding pathway. In turn, with a local focus, a broader form of advocacy for wider action is created.

16.5 Final Comments

Since the field first emerged, most DOHaD research has been premised and designed on the assumption that a singular developmental trigger would change biology with specific latter outcomes that manifest under particular conditions [Reference Hanson and Gluckman41]. That model assumed that devising a singular intervention might be possible. But, 35 years on, it is clear that subsumed within the DOHaD ‘space’ are multiple and overlapping ways in which the developmental trajectory can be affected that in turn can have variable impacts later depending on genetic influences and later environmental exposures. With this understanding comes the need to think differently about how DOHaD knowledge enters the public domain. This requires partnership with others committed to the MNCAH field and translation of DOHaD knowledge and advocacy into a greater awareness of the importance of intergenerational health and circumstance. The solutions needed do not involve singular interventions and will require a reorientation of society and community values. An approach in part focused on the community, in part on the policymaker, is required. The DOHaD research community itself must now also evolve to meet these obligations.

Chapter 17 Framing DOHaD for Policy and Society

Chandni Maria Jacob , Michael Penkler , Ruth Müller , and Mark Hanson
17.1 Introduction

Developmental Origins of Health and Disease (DOHaD) research has shown that social, economic, and environmental experiences and exposures in early life greatly affect an individual’s ability to develop, grow, and experience long-term health and well-being. Recently, the focus has moved from animal and biomedical studies on DOHaD mechanisms [Reference Hanson and Gluckman1] to the translation of research findings into wider public health intervention and policy. The DOHaD concept has gained some international attention in the last 10 years, for example figuring prominently in reports from the World Health Organization (WHO), including the Commission on Ending Childhood Obesity [2]. At the same time, a lack of clear strategies to implement the concept has led to only partial translation into policies, public health interventions, and clinical practice [Reference Hanson, Poston and Gluckman3].

When communicating with policy and other audiences, researchers usually engage in a practice known as ‘framing’. Framing is a concept from communication studies, social psychology, and sociology that is based on the premise ‘that an issue can be viewed from a variety of perspectives and be construed as having implications for multiple values or considerations’ [Reference Chong and Druckman4, p. 104]. Framing is an act of communication that presents a specific view and thereby ‘enables individuals to organize experience, to simplify and make sense of the world around them, and to justify and facilitate collective action’ [Reference Shiffman5, p. 183]. Frames can highlight specific aspects of an issue or solution and implicate particular moral judgements [Reference Scheufele6]. Frames are collectively shared and persistent, often developing over time, but can also be used strategically to champion specific interpretations of facts and to promote specific avenues for collective or policy action. The concept can be used as a tool to understand how scientific facts are ordered and presented, thus imbuing them with meaning and values when communicating findings to policy and society (see also Kenney and Müller in this volume).

In this chapter, we investigate how DOHaD researchers and interdisciplinary networks rooted in the DOHaD paradigm frame their research in attempts to translate it into policy, and we discuss the potential and challenges of these frames. We first provide a brief overview of prevalent forms of framing in DOHaD more generally before we discuss two empirical examples in which some of the authors have been involved. We conclude by highlighting opportunities to frame DOHaD messages in a social justice framework, and we propose directions for future research and advocacy.

17.2 Overview of Common DOHaD Frames

Other contributions to this handbook discuss at length how DOHaD science has been and continues to frame its findings. Hanson and Buklijas show how a social medicine frame was prominent in the formation of the early DOHaD field. David Barker’s work, for instance, had a strong focus on how social and health inequalities are linked and perpetuated, and Barker was centrally involved in efforts to promote social policies aimed at reducing inequities in health. This frame, with its strong focus on social determinants of health, was increasingly replaced by a biomedical frame that foregrounded individual and somatic factors, particularly the maternal body. According to Hanson and Buklijas, this ‘telescoping’ [Reference Warin, Moore, Zivkovic and Davies7], from social conditions to dietary components and molecular pathways, has been the result of broader socio-political contexts and a related restructuring of DOHaD as a firmly biomedical field.

The foregrounding of different causal factors within a DOHaD frame is tied to how responsibilities are distributed and to who is regarded as the most pertinent agent for action. Chiapperino et al., also in this handbook, highlight the ‘paradox’ that DOHaD research communication, while often rhetorically acknowledging social determinants, still in practice often focuses on individual responsibility for action, especially targeting women’s dietary and other health behaviours [Reference McKerracher, Moffat, Barker, Williams and Sloboda8, Reference Müller, Hanson, Hanson, Penkler, Samaras and Chiapperino9]. The frames used for communication to the general public about preventing non-communicable diseases (NCDs), for instance, through the media, largely emphasise individual behaviour change (particularly mothers’ lifestyles, weight loss, and diet modification) and diminish the role of other agencies (e.g. food industries and marketing) [Reference Penkler, Hanson, Biesma and Müller10]. Framing DOHaD findings in a way that emphasises women as primarily responsible for their offspring’s healthy development has been criticised as promoting maternal blame and stigma. Richardson et al. (2014) in a critical article wrote that ‘exaggerations and over-simplifications are making scapegoats of mothers, and could even increase surveillance and regulation of pregnant women’ [Reference Richardson, Daniels, Gillman, Golden, Kukla and Kuzawa11].

Many DOHaD researchers welcome this critique, and prominent figures have co-authored articles that call for a wider framing that moves away from maternal blame and individual attributions of responsibility. Such a social justice framing [12] instead emphasises the social, political, and economic dimensions that shape developmental outcomes and calls for policy translations of DOHaD that emphasise the need for action through social policy and health equity [Reference Müller, Hanson, Hanson, Penkler, Samaras and Chiapperino9]. Yet, based on reviews of interventions using a DOHaD model [Reference Jacob, Newell and Hanson13] and a recent ethnographic study of researchers working in DOHaD-focused institutes [Reference Penkler14], it is evident that the DOHaD and lifecourse fields largely still use a biomedical frame. More recently, some DOHaD scholars have begun to promote the formation of wider multidisciplinary coalitions and advocacy networks to improve messaging, framing, and ultimately policy impact. In the following, we explore two such coalitions and if and how their framing activities depart from and improve on the status quo in DOHaD.

17.3 Case Studies of Two Multidisciplinary Coalitions and Advocacy Networks

As Low and colleagues describe in this volume, there is a serious effort to translate DOHaD knowledge into policy and society through advocacy by collaborative networks. These have been based on a ‘facilitational’ model of advocacy [Reference Oliver and Cairney15] that emphasises the joint and participatory production and communication of knowledge by collaborations between scientists, civil society organisations, and policymakers, as seen for instance with climate change-related policies [Reference Gluckman, Bardsley and Kaiser16]. Several such multi-sectoral alliances have been formed in the last decade to advocate for collective action to translate DOHaD and lifecourse research into policy at national and international levels. Below, we discuss two such networks – the Venice Forum [Reference Meka, Jacob, Modi, Bustreo, Di Renzo and Malamitsi‐Puchner17] and the UK Preconception Partnership [18].

In order to explore how DOHaD messages have been framed by these two networks, we consider two aspects proposed by global health policy experts [Reference Shiffman5]: problem definition (internal framing) and positioning (external framing). Problem definition is concerned with how actors internal to the network view or conceptualise the issue and its solutions. Within a network, there may be a common understanding of or disagreement on the primary rationale for why an issue is important. Positioning on the other hand deals with how the messages are communicated to an audience external to the network, with the goal of inspiring them to act. While an internal consensus on framing increases credibility when presented to external audiences (such as policymakers), the success of a frame can also depend on the legitimacy of the experts endorsing it. Positioning is often tailored to resonate with the target external actors such as policymakers or funding bodies [Reference Shiffman5].

As both the Venice Forum and the UK Preconception Partnership broadly focus on the translation of messages from DOHaD research, with common actors in membership for both groups, there has been overlap in frames used by them. We first present an overview of each network (Table 17.1)Footnote 1 and the frames they use in their collective advocacy before discussing the implications of the employed frames.

Table 17.1 Overview of the two advocacy networks

Venice ForumPreconception Partnership
Aim/Key agendaTo make the case for increased investment in maternal, newborn, and child health (MNCH) for long-term benefits to the population and for inter-generational impactTo ‘normalise’ the concept of pregnancy preparation and improve population health through intervention in the preconception period
FocusDOHaD-related outcomes, transgenerational health, and engagement with policymakers for advocacyDOHaD-related outcomes, translation of evidence into policy, and co-production with public health authorities in the UK. Key target groups have been future parents, policymakers, and practitioners.
OriginEstablished in 2019 as an informal think tankEstablished in 2018 with the publication of the landmark Lancet series [Reference Stephenson, Heslehurst, Hall, Schoenaker, Hutchinson and Cade19] on preconception health
Governance and membershipLed by a core team of six board members with a clinical and academic background in DOHaD. The annual international forums include an informal network of health-oriented professionals, academic and scientific societies (from obstetrics and gynaecology, neonatology and paediatrics, public health, health economics, social science, and education), clinical organisations, patients’ rights groups, and NGOs predominantly from high-income and European contexts.Led by two academic chairs with well-defined subgroups and roles. The remit of the group has expanded with membership predominantly from UK-based academics (from fields of nutrition, sexual reproductive health, public health, psychology, mental health, epidemiology, etc.), public health entities, NGOs, charities, and healthcare professionals (obstetrics and gynaecology, community health workers, and general practitioners).
Target audienceGlobal policymakersPredominantly UK focused policymakers, the general public, and clinical organisations
17.3.1 The Venice Forum (Global)

The Venice Forum was established in 2019 by a group of independent academics and healthcare professionals to explore the impact of economic and other crises (e.g. war and famine) on DOHaD outcomes globally. Based on evidence that crises such as the 2008 economic downturn have a disproportionate impact on women and children, the main goal of the Venice Forum is to advocate for an ethical imperative of supporting early childhood development, thus preventing the intergenerational passage of risk.

This agenda gained new urgency by the COVID-19 pandemic, which further exposed inequalities in health and well-being [Reference Penkler14], but also inequalities in responses to the pandemic. For example, research during the early stages of the pandemic (for example on vaccine safety) often excluded children and pregnant or breastfeeding women [Reference Vassallo, Womersley, Norton and Sheel20]. Post-pandemic, the focus of the Venice Forum shifted from the impact of economic crises and natural disasters on MNCH to understanding factors that build resilient societies, making an argument for embedding MNCH as core to research and policymaking aimed at developing healthier societies [Reference Jacob, Briana, Di Renzo, Modi, Bustreo and Conti21].

The Forum has often framed its policy messages in economic terms. It has developed key arguments from early-life interventions such as the Perry Preschool and Abecedarian programmes that show how such interventions can have long-term economic benefits, higher school completion rates, college attendance, lower rates of teenage pregnancy, dependency, and welfare [Reference Heckman22, Reference Heckman, Moon, Pinto, Savelyev and Yavitz23]. The rationale for employing an economic frame that emphasises long-term cost reductions and returns on investment has been the assumption that non-health outcomes are important issues from a policymaker’s perspective. Ongoing projects by the Forum include specific recommendations for policy, for example introducing parental leave for the first six months of life. The assumption is that the economic frame is more likely to elicit a response from finance ministers and other governmental departments outside healthcare. In this context, the Forum has strategically tried to promote a ‘technification’[Reference Shiffman and Shawar24] of the issue – in this case conveying the economic costs of a lack of investment in early years and in parenthood and portraying the issue as one that can – and should – be addressed primarily through science and economics, and not necessarily on the individual level, thus developing an ‘investment case’ for MNCH.

At the same time, the Forum has also adopted a contrary approach, emphasising the need to reframe the way ‘value’ is conceptualised in policymaking and financing. While supporting the development of an investment case described above, the Venice forum has also challenged the dominant view that economic growth measured by GDP is an adequate measure of success, when it does not include unremunerated contributions to society such as childbearing, domestic work, and care – largely conducted by women in most societies [Reference Meka, Jacob, Modi, Bustreo, Di Renzo and Malamitsi‐Puchner17]; see also Cohen in this volume. The Venice Forum has explored and promoted newer frames of a ‘caring economy’ [25] that include well-being as an indicator of economic success over GDP and employ alternative measures to include unremunerated work, such as the Human Capital Index or the Genuine Progress Indicator. The goal of these new frames is to shift the approach from mainstream economics that focuses predominantly on market relations towards feminist economics that values women’s contributions. However, framing issues of health in terms of economic benefits always carries the risk of contributing to rather than resisting approaches in which health only matters in terms of its economic impact, rather than emphasising health and access to healthcare as human rights and values in themselves.

The Forum has also strategically engaged in linking MNCH to the climate crisis, recommending inter-sectoral actions required to address climate change – such as reducing air pollution and low-environmental impact diets – that are also beneficial for health. Such focus on policy framed in terms of human and planetary well-being might benefit from the existing momentum for the climate crisis agenda. The Forum perceives that climate is of high importance to younger people, thus providing an opportunity to disseminate messages by highlighting their concurrent benefits for health and the environment.

The Venice Forum has also strategically decided to emphasise the benefits of intergenerational health to prioritise investments in MNCH. While a focus on child/newborn health might have greater political traction, such a focus potentially competes with the maternal health agenda when the health of the fetus is emphasised at the expense of women’s health for their own benefit [Reference Shiffman and Smith26]. A framing of MNCH in terms of long-term investments used by the forum can thus compete with an ethical frame that positions MNCH as a matter of women’s rights and equity – a frame that was also utilised by the Forum, which called for urgent action in this area due to slow progress.

Overall, the Venice Forum has targeted policymakers and international health organisations using a variety of different framings – a social justice framing, economic framings, frames related to intergenerational health benefits, synergies with climate change, and ethical frames for women’s rights.

17.3.2 The UK Preconception Partnership (United Kingdom)

The 2018 landmark Lancet series on preconception health [Reference Stephenson, Heslehurst, Hall, Schoenaker, Hutchinson and Cade19] made a strong case that ‘preconception’ forms a key period for health interventions that have long-term benefits for subsequent maternal and child health. The Partnership that formed after this series meets regularly and has worked extensively with local authorities in the UK and stakeholders such as the Office for Health Inequalities and Disparities (OHID) (under the Department of Health and Social Care, UK). Targeted engagement, particularly in the local/national context, has been an advantage for the Partnership, facilitated by the inclusion of knowledge brokers (stakeholders facilitating knowledge transfer from research to policy) in the network.

While the Partnership is interdisciplinary in its membership, there is a higher representation from healthcare organisations and the biomedical sciences (see Table 17.1). The Partnership’s stated goal is to ‘normalise’ the concept of preparation for pregnancy and parenthood, thus framing adolescence and early adulthood as a ‘pre-conception period’ where young people should be encouraged and empowered to engage in healthy activities both for the sake of their own health and also to prepare for (potential) pregnancies.

The Preconception Partnership has overall adopted a lifecourse approach to preconception care, focusing on adolescent health, inter-pregnancy health, and post-partum care as key periods to include in the definition of preconception health. The Partnership has positioned this approach within a reproductive justice framework that considers ‘the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities’ [Reference Song27]. In supporting women’s rights to make decisions related to fertility and contraception, the Preconception Partnership (among other global networks) has endorsed universal screening for pregnancy intention with clinical tools to discuss the desire to be pregnant or avoid pregnancy [Reference Hall, Barrett, Stephenson, Edelman and Rocca28, Reference Stephenson, Schoenaker, Hinton, Poston, Barker and Alwan29]. This also relates to the reproductive justice framework that includes equitable access to a range of health services such as contraception, sexual health, and abortion (which women of colour and marginalised groups often have barriers accessing as a core component). However, an overemphasis on reproductive health could propagate a view of women as ‘vessels of reproduction’ [Reference Verbiest, Shawe and Steegers30], in which young women are primarily viewed and addressed as future mothers [Reference Waggoner31]. Ongoing work by members also has focused on the extension of health behaviours to adolescence, for example through school-based interventions to promote scientific and health literacy [Reference Woods-Townsend, Hardy-Johnson, Bagust, Barker, Davey and Griffiths32].

A recent study by Jacob [Reference Jacob33] has shown different and partly competing ways of framing the internal discussions and external communications of the Partnership. On the one hand, the Partnership has framed preconception health as a systemic issue and promoted policies and public health campaigns aimed at addressing socio-economic inequalities in women’s health. One prominent Partnership initiative has been to improve the evidence base for health policy focused on the preconception period and to hold policymakers accountable for issues in preconception care that show links with deprivation. To this end, the Partnership has focused on using routine data from maternity care programmes to develop a report card on preconception health status in the UK [Reference Schoenaker, Stephenson, Smith, Thurland, Duncan and Godfrey34]. The analysis of national maternity services data (England) highlighted inequalities based on age (e.g. younger women were less likely to take folic acid supplements preconception), ethnicity, and deprivation and in turn provided outcomes and indicators for accountability. Members’ publications have also emphasised the impact of wider determinants of health [Reference Hall, Chawla, Watson, Jacob, Schoenaker and Connolly35] and called on governments as key actors to address preconception health at the policy level.

At the same time, framings of risk factors like obesity as being linked to systemic problems influenced by the environment and deprivation contrasted with recommendations to change lifestyles with support from clinicians. The clinical setting, where clinicians often meet women with or without their partners, was often framed as an effective and easily accessible platform for the dissemination of preconception health messages. In this view, postnatal care presents a ‘window of opportunity’ for both the next pregnancy and early childhood development [Reference Stephenson, Schoenaker, Hinton, Poston, Barker and Alwan29, Reference Jacob, Killeen, McAuliffe, Stephenson, Hod and Diaz Yamal36]. However, such recommendations were also critically discussed within the Partnership, as it was argued that they could lead to individual attributions of responsibility and a stigmatised framing of behaviours deemed unhealthy, particularly among low-income populations. It was argued that focusing on influencing behaviours through the dissemination of health messages also assigns a set of values and moral implications, falling disproportionately on women and addressing them primarily as reproductive agents [Reference Jacob33].

In order to address these issues, the Partnership has recently conducted several public engagement activities to investigate appropriate ways for developing and framing health messages that avoid unintended and harmful consequences. Unsurprisingly, using the term ‘preconception’ was not preferred by participants (women living in the UK) [37]. Additionally, participants also recommended gender-inclusive terms that could capture the interest of men, who often felt excluded from the conversation on health for their children [Reference Schoenaker, Gafari, Taylor, Hall, Barker and Jones38]. While the area of male preconception health and its impact on long-term health has been increasingly discussed within the Partnership, messages related to men’s health before pregnancy were often lacking in their outputs. Framing preconception health mainly around women’s health and bodies could further alienate men and non-binary individuals from engaging in health messages and conversations around preconception care [Reference Schoenaker, Gafari, Taylor, Hall, Barker and Jones38]. Studies from low- and middle-income settings have, however, shown that men were keen to be involved in engaging in such conversations [Reference Watson, Chatio, Barker, Boua, Compaoré and Dalaba39]. The need to represent health findings without causing alarm is key for the public’s engagement with preconception health messages, considering the probabilistic nature of the associations in DOHaD studies [Reference Müller, Hanson, Hanson, Penkler, Samaras and Chiapperino9]. Framings related to ‘unplanned pregnancies’ as a risk factor for a negative outcome were often used by the Partnership. This may also need to be revisited as studies have shown that people may not perceive unplanned pregnancies to be a negative outcome, nor is pregnancy intentionality a straightforward idea [Reference Grace, Shawe, Barrett, Usman and Stephenson40, Reference Johnson-Hanks41].

Another question that proved internally contentious within the Partnership was how to frame obesity. Though publications have acknowledged the wider determinants of obesity and the need to reduce stigma in clinical conversations, obesity is also framed as a condition in need of medical treatment or intervention [Reference Stephenson, Schoenaker, Hinton, Poston, Barker and Alwan29, Reference Jacob, Killeen, McAuliffe, Stephenson, Hod and Diaz Yamal36, Reference Barker, Dombrowski, Colbourn, Fall, Kriznik and Lawrence42], in accordance with recent World Obesity Federation campaigns (2018–19). However, internally members of both the Partnership and the Venice Forum have contested this medical framing, as over-medicalising the issue presents challenges in policy translation. One such challenge is that an increased focus on addressing obesity through healthcare and weight management services might lead to reduced investments in preventive policies that target systemic drivers of obesity, such as the marketing of foods or food composition. Framings of obesity as a medical condition also potentially conflict with a social justice framework. Feminist scholars and fat activists have argued that framing obesity in medical terms may contribute to weight stigma in which individuals are blamed for their body shape and ill health. Such frames in particular target women and minorities and lead to localising structural problems within individual bodies, thus potentially deflecting policy attention away from the systemic conditions that drive inequities in health. (See Lappé and Valdez in this handbook.) Additionally, conversations focusing only on weight can also lead to unintended consequences such as repeated cycles of weight gain and loss, eating disorders, weight stigmatisation, and mental health issues, thus calling for a person-centred approach [Reference Bacon and Aphramor43].

From a social justice perspective, health interventions and policies based on individual behaviour change appear as particularly problematic. Such interventions were also debated internally within the Partnership, with one point of debate being how health messages related to preconception health should be framed. Preconception health interventions that target individual behaviour change predominantly focus on rational aspects of decision-making (e.g. providing information on food-based dietary guidelines and Eatwell plates), and overall DOHaD health messaging tends to focus on risks and potential negative outcomes. In contrast, the Preconception Partnership has recommended appealing to emotional aspects of the benefits of healthy growth and development [Reference McKerracher, Moffat, Barker, Williams and Sloboda8]. This is especially relevant as health messages compete with framings by the private sector, which focus on selling comfort and happiness – for example with the use of infant formula. Framing preconception health messages in more positive terms has the goal of improving the public and policy uptake of these messages.

Thus the Preconception Partnership has used framings similar to the Venice Forum on intergenerational benefits and health across the lifecourse, social justice, and the reproductive justice framework. However, medicalised framings of obesity are still evident along with a focus on women’s fertility and pregnancy planning.

17.3.2.1 Competing Framings in DOHaD Health Advocacy

Research findings from DOHaD can be framed in different ways, imbuing them with different meanings to link to different types of policy recommendations. Such frames may not incorporate all aspects of the issue in question and present a risk of oversimplification of a complex field, as seen in the above examples. Figure 17.1 is a conceptual figure summarising examples of framings used by the networks in publications and other media, which we have listed by the potential impact it could have if applied in healthcare, policy, and interventions.

Figure 17.1 The framings used within groups and for communicating to an external audience are illustrated in the figure. Certain framings may have potentially negative consequences, while others have more positive effects as shown by the arrow.

DOHaD frames may emerge in multiple ways, not limited to evidence generated from research but also as a response to the evidence demand from governments/policymakers, major societal events, and public opinion. Efforts to bring DOHaD insights into policy and health interventions are often driven by a sense of urgency and an understanding that it is an ethical imperative to act now to improve MNCH and to address persistent inequalities in health. This sense of urgency often translates into efforts to influence policy and the public ‘effectively’, for example through strategically framing DOHaD messages in ways that make them more palatable to policymakers and the public, and thus more likely to influence policies and health behaviours.

Such efforts and emphasis on urgency can also lead to unintended consequences that may be at odds with the goal of promoting health equity and social justice – especially when the potential negative impacts of employed framings are not given adequate consideration. For example, alarmist language – obesity as ‘a ticking time bomb’, or the ‘war on obesity’ – might be an adequate way to garner policy and media attention, but it also has the potential to increase weight stigma when fat people are implicitly framed as a threat to society, economic prosperity, and the welfare state’s future [Reference Penkler, Felder and Felt44]. This becomes particularly problematic when public health campaigns are aimed at marginalised parts of the population.

Similarly, an economic frame of ‘returns on investment’ might be well suited to attract policymakers’ interests – but it carries the danger of propagating eugenic logics when women are targeted primarily in the name of the offspring’s health, as discussed by Cohen in her contribution to this volume. And a framing that highlights individual agency in relation to factors that influence the development of health and disease may be well suited to inform individual action – but runs the risk of also increasing blame and of reinforcing health inequalities as not everybody has the necessary resources to act.

The analysis of our two case studies has shown contestations around how to frame DOHaD for policy and society. Individualising and potentially stigmatising frames were critiqued in internal discussions. At the same time, there are strong incentives for simplistic frames to ‘effectively’ translate DOHaD. While such framings might make strategic sense, DOHaD researchers should be aware of the trade-offs and potential costs of such framings. This shows the need for constant reflection and negotiation around appropriate ways of framing DOHaD messages – with interdisciplinary advocacy networks being well suited to facilitate such negotiations by bringing together different disciplinary, societal, and policy viewpoints.

17.4 Recommendations for Reframing DOHaD

Kenney and Müller in this volume provide a useful list of suggestions on how to engage in crafting and propagating health-related narratives. We highly encourage readers to consider these recommendations. Here, based on our discussion of our two case studies, we highlight a few points.

First, we want to highlight how important it is to be reflective about the framings employed in translating DOHaD messages into society and policy. In order to achieve societal and policy impact, there is a need to strategically employ specific framings. At the same time, scholars and practitioners should also be conscious of the potential negative impacts of the framings employed and about what trade-offs are involved when employing specific frames. However, this demand for ‘targeted messaging’ could also have led to competing or conflicting frames within the same network, as seen in the case studies. We advise DOHaD researchers to be particularly cautious when employing economic framings when talking about the value of health, when employing alarmist language, and when promoting interventions that target predominantly individual health behaviours.

Second, our discussion of the two case studies shows that finding and employing appropriate framings is a continuous process. As Chiapperino et al. in this volume discuss, DOHaD researchers often in principle subscribe to and are motivated by a social justice framing of DOHaD, which highlights the need to address inequities in health through social policy. Such a social justice framing is also fundamental to the Forum’s and Partnership’s work, but at the same time there are powerful institutional and policy incentives to frame health messages in ways that are antithetical to such a social justice framing (see also Penkler 2022). There are competing interests and factors at work that encourage perhaps more reductionist framings of DOHaD findings that imply more individual translations. Finding the adequate balance and engaging in DOHaD messaging that is both effective and avoids negative outcomes is a continuous process that DOHaD researchers should be reflective about. Such ongoing reflection can also help tackle the challenge of developing messages that account for both the individual-level and population-level actions required to address the health issues in consideration. An example of work towards this is the Preconception Partnership’s multidisciplinary representation and ongoing study with the public on the appropriate inclusive language to be used in public health messaging related to preconception health [Reference Schoenaker, Gafari, Taylor, Hall, Barker and Jones38]. We recommend a continued need for engagement and reflection on the frames used by both networks due to the conflicting frames discussed.

Thirdly, advocacy networks such as the case studies included here are particularly well suited for such negotiations. They offer ways of breaking the siloes of academic research groups and allow researchers to engage with the public, wider disciplines, and policymakers. They allow the inclusion of different disciplinary, societal, and policy viewpoints and a forum to engage and negotiate about appropriate framings. Diversity within networks (disciplinary and geographic) and links with a wider range of actors outside research (policy, communities, private sector, healthcare sector, charities, and activists) are needed to develop solutions that are sensitive to the available resources and environmental and socio-economic factors influencing health behaviours, cultural practices, and differences in behaviours based on ethnicity/income groups. Our recommendation in this context is to further broaden advocacy coalitions to also include more non-scientific, non-health, and non-policy actors, such as activists and community members. Co-creating frames is a way of making them more socially robust and aligned with values of social justice and equality, as work in the Preconception Partnership has shown when including civic society. In order to pursue co-creation effectively, it is important to include a wider range of stakeholders (including civic society) proactively and early on, including them in upstream discussions about what appropriate frames and goals are, and not only downstream. Such engagement can help ensure that the very goals of advocacy networks (such as ‘improving health’) should not be taken as given, but up for negotiation when engaging collectively in finding appropriate frames for translating DOHaD into policy and society.

In conclusion, we argue that a return to ‘business as usual’ by adopting medical and individual framings for DOHaD translation would be inadequate to address the increasing disparities in MNCH, obesity, and NCD-related issues. Such a global outlook, which includes justice and addressing inequalities, will help in translating the DOHaD and lifecourse models into policy that integrates not only life stages from preconception but also all wider societal factors that shape human well-being.

Chapter 18 The Impact of Community-Based Participatory DOHaD Research

Siobhan Tu’akoi , Mark H. Vickers , Celeste Barrett-Watson , Kura Samuel-Ioane , Teaukura Puna , Drollet Joseph , and Jacquie L. Bay
18.1 Introduction

As outlined in the preceding chapters, the Developmental Origins of Health and Disease (DOHaD) concept is a lifecourse approach that describes how environmental exposures in the early-life stages can impact later-life health outcomes. This paradigm has developed considerably since Barker’s early findings, solidifying links between adverse early-life events in childhood, pregnancy, and preconception and later risk for non-communicable diseases (NCDs) [Reference Hanson and Gluckman1, Reference Barker and Osmond2]. Such risk events are not experienced equally, with structural and social determinants such as economic stability, housing, access to healthcare, and the wider built environment influencing the ability of individuals and communities to experience good health. Within the DOHaD field, there is increasing support for the integration of social justice and participatory lenses in research, acknowledging that all people deserve equal opportunities to be healthy [Reference M’hamdi, de Beaufort, Jack and Steegers3Reference Tu’akoi, Vickers and Bay5]. Such approaches require partnerships that empower and collaborate with the communities who participate in research in order to reduce the power imbalance and better understand the contexts in which health challenges are situated [Reference Penkler, Jacob, Müller, Kenney, Norris and da Costa4]. This encourages the normalisation and inclusion of different types of evidence that are all valuable for addressing health issues, including scientific evidence, sociological factors, and local community knowledge. This chapter describes how a community-based participatory research (CBPR) approach used within the DOHaD field could significantly benefit researchers, communities, and health outcomes. It outlines what CBPR involves and current participatory DOHaD work being undertaken and draws on examples of our own CBPR in the Cook Islands.

18.2 Community-Based Participatory Research in DOHaD
18.2.1 What Is Community-Based Participatory Research?

Community-based participatory research is a collaborative approach to research that aims to engage researchers and community members in equal partnership throughout all stages of the research process [Reference Tremblay, Martin, McComber, McGregor and Macaulay6]. It is widely understood that CBPR developed from action research, an approach proposed in the 1940s by social scientist Kurt Lewis as a way of addressing social problems by undertaking research with or by the study population [Reference Holkup, Tripp-Reimer, Salois and Weinert7]. Although referred to by a variety of terms, such as action research, participatory research, action science, co-operative inquiry, and community-based research, the shared idea between these concepts is participatory knowledge production that involves the study population [Reference Holkup, Tripp-Reimer, Salois and Weinert7]. A critical aspect of the CBPR approach is acknowledging that both researchers and community members hold essential knowledge that is equally valuable for conducting rigorous and impactful research. Western research approaches have traditionally assumed that research phenomena can and should be separated from their broader context to conduct valid and reliable studies [Reference Holkup, Tripp-Reimer, Salois and Weinert7]. CBPR rejects this assertion and recognises the value of different types of knowledge and contextual evidence. In his work exploring the power of professionals and local communities working together, Corburn describes expertise not as an objective truth but as something that can be collaboratively produced to enable better research and policy solutions [Reference Corburn8]. Researchers are trained in experimental, epidemiologic, and systematic data collection practices, validated by statistical significance and other professional standards [Reference Corburn8]. This knowledge is typically tested via forums such as peer review processes and media. On the other hand, communities hold important local knowledge that has been acquired through experiences, cultural and social traditions, and intergenerational storytelling. This knowledge can be tested via forums such as public narratives, community stories, and media [Reference Corburn8]. CBPR approaches emphasise that both forms of evidence are critical for improving research validity and driving social change within communities.

Table 18.1 outlines nine general principles of CBPR proposed by Israel and colleagues that reflect multiple approaches and lessons learned from previous participatory research structures [Reference Israel, Eng, Schulz and Parker9].

Table 18.1 General principles of CBPR [Reference Israel, Eng, Schulz and Parker9]

PrinciplesExplanation
1. Acknowledges the community as a unit of identity.Identifying and working with groups that share a common membership or identity, such as a social network, ethnic group, or geographical neighbourhood.
2. Builds on the strengths and resources within the community.Developing the strengths, expertise, and assets that already exist within a community.
3. Facilitates a collaborative, equitable partnership across all research phases.Requires a foundation of mutual respect and trust to ensure all partners share decision-making and control throughout the research.
4. Fosters reciprocal exchange and capacity building among all partners.Recognising that all parties bring diverse and valuable knowledge and experiences.
5. Integrates knowledge generation and translation of research findings for the mutual benefit of all partners.Making a commitment to ensuring research findings are translated into action.
6. Focuses on public health concerns that are relevant to the community using an ecological perspective that recognises the multiple determinants of health.Recognising the individual, community, and societal contexts and considering broader determinants of health and disease.
7. Involves systems development using a cyclical and iterative process.Within the system or partnership, this involves a cycle of feedback to develop and improve each stage of the research.
8. Disseminates findings to all partners and engages them in wider dissemination.Ensuring the research is disseminated in ways that are useful and appropriate for all partners.
9. Prioritises a long-term process and commitment to sustainability.Making a long-term commitment to ensuring the sustainability of projects or action outcomes beyond a single funding period is critical.

Empowering communities to be actively involved in conceptualising and leading research is important from a social justice perspective. Criticisms of non-participatory research studies often include a lack of understanding of local socio-cultural factors, leading to limited acceptability of findings by the communities themselves [Reference De las, Hacker, DiGirolamo and Hicks10]. In particular, research on Indigenous and marginalised communities has historically been conducted without community input, leading to uninformed conclusions that may not address community priorities and contributing to a general mistrust of research by those communities [Reference Fitzpatrick, Martiniuk, D’Antoine, Oscar, Carter and Elliott11]. Fitzpatrick and colleagues acknowledge that ‘researchers have often been perceived as doing research on, and not with Indigenous people, with little regard to local cultural protocols and languages and without seeking consent from communities’ [Reference Fitzpatrick, Martiniuk, D’Antoine, Oscar, Carter and Elliott11]. Social justice and empowerment are the foundations of CBPR, ensuring that communities are equal partners in setting research questions, conducting the research, and interpreting what the data mean. This approach not only values the community’s expertise but also addresses their moral right to data ownership and leading research that affects their own community.

Key benefits of CBPR include the potential for research findings to be more acceptable and impactful, leading to community-led action and, in turn, increased potential for long-term benefits [Reference Cook12]. Salimi and colleagues systematically reviewed CBPR health projects and found that they enhanced skills and capabilities within the community, resulting in community-level action [Reference Salimi, Shahandeh, Malekafzali, Loori, Kheiltash and Jamshidi13]. CBPR approaches can also be valuable in ensuring the participation and retention of historically marginalised ethnic groups who are traditionally underrepresented in health research [Reference De las, Hacker, DiGirolamo and Hicks14]. A review by Cook found reciprocal benefits of working together, stating:

Academic researchers reported that community collaboration had been valuable in making the studies possible and valid and in generating credible data. Community partners helped academic researchers to recruit and retain study participants … (and) to render research more culturally sensitive and acceptable to the participants and relevant to the local context. [Reference Cook12, p. 669]

To create better and more robust DOHaD knowledge for action and social change, particularly for Indigenous and disadvantaged groups, partnerships between researchers and the communities that contend with the real-world challenges are essential.

18.2.2 CBPR in the DOHaD Field

Penkler and colleagues argue that better understandings of the health contexts where communities engage are critical to equitably improving intergenerational health and well-being [Reference Penkler, Jacob, Müller, Kenney, Norris and da Costa4]. Utilising CBPR and actively engaging communities in co-developing research projects can provide major benefits for DOHaD research, local community capabilities, and health outcomes [Reference Penkler, Jacob, Müller, Kenney, Norris and da Costa4]. While CBPR approaches remain limited in the DOHaD field, there are key examples where partnerships and participatory frameworks have enhanced the research and knowledge translation processes. Presented below is a snapshot of three participatory approaches grounded in DOHaD theory. Each carries out important work to contribute to the health and well-being of their communities.

In recognition of the inequitable health outcomes faced by Australia’s Aboriginal population, for example the increased likelihood of premature birth and poorer infant outcomes compared to the rest of the population, the Gomeroi Gaaynggal programme was established [Reference Rae, Weatherall, Clausen, Maxwell, Bowman and Milgate15]. Initially designed by reproductive scientists, the study underwent an extensive two-year community consultation phase with Aboriginal organisations and health services, Elders, young mum’s groups, men’s and women’s groups, prison staff, and wider community members that revealed key community priorities [Reference Rae, Weatherall, Clausen, Maxwell, Bowman and Milgate15, Reference Rae, Weatherall, Hollebone, Apen, McLean and Blackwell16]. As a result, Gomeroi gaaynggal became a two-pronged approach, including a research study and a community-focused arts health programme. Working in partnership with Aboriginal communities in New South Wales, the programme’s research focuses on understanding the drivers of adverse health outcomes during pregnancy among Indigenous women and how that affects long-term health and infant health. One study on the prospective cohort of Aboriginal women and infants showed that less than 50 per cent of breastfeeding women were meeting nutrient requirements for folate, iodine, and calcium. Although breastfeeding initiation was high at 85.9 per cent, the median duration of breastfeeding was only approximately 42 days, in contrast to the recommended six months [Reference Ashman, Collins, Weatherall, Keogh, Brown and Rollo17]. The research identified the need for promoting sustained breastfeeding practices and improving education on optimal nutrition for mothers and infants.

The arts health portion of the programme was initiated after Aboriginal partners identified a widely held view among the community that existing antenatal education classes were not culturally appropriate for their community [Reference Rae, Weatherall, Clausen, Maxwell, Bowman and Milgate15]. Acknowledging that antenatal class attendance can have benefits not only for improving education and access to healthcare but also for increasing social connectedness and support networks, Gomeroi Gaaynggal established a culturally appropriate arts health centre [Reference Rae, Weatherall, Clausen, Maxwell, Bowman and Milgate15, Reference Rae, Weatherall, Hollebone, Apen, McLean and Blackwell16]. A range of topics are covered in the education programme, including antenatal care, mental health, and dietetics [Reference Rae, Weatherall, Blackwell, Pringle, Smith and Lumbers18]. The centre also facilitates cooking classes, cultural art activities, baby health checks, and spaces for local artists and Elders to share stories. The programme continues to evolve in line with what is needed and relevant as decided by the community themselves. By fostering strong relationships with Aboriginal families, Elders, and community members, the Gomeroi gaaynggal research team recognised the positive impact this had on building an Aboriginal research cohort, study retention, and improvements in health literacy and antenatal outcomes from the arts health programme. While acknowledging that this participatory approach can be a costly and lengthy process, the benefits for research, translation of research findings, and, importantly, for the health and social outcomes of the local Aboriginal community are clear [Reference Rae, Weatherall, Clausen, Maxwell, Bowman and Milgate15].

In Alberta, Canada, the ENRICH research team has developed similar CBPR approaches. In particular, their collaborative work with a large Cree First Nations community aims to address the disproportionate health burden experienced by Indigenous women by exploring better ways of supporting women and families in pregnancy and post-partum [19]. After an initial year and a half of strong engagement with the community, a research partnership was formalised via a Community Advisory Committee, which included Elders, health and social service professionals, and wider community members [Reference Oster, Bruno, Montour, Roasting, Lightning and Rain20]. This committee collaborated with researchers to jointly design research protocols, interpret data, and contribute to dissemination. This resulted in several research and knowledge translation pathways, including exploring Cree men’s experiences of their partner’s pregnancy, implementing cultural sensitivity interventions for primary care staff, and understanding effective prenatal care for Cree women [19, Reference Oster, Bruno, Montour, Roasting, Lightning and Rain20]. The latter involved an ethnographic CBPR study investigating views and perceptions of prenatal healthcare providers in the Cree community of Maskwacis, Alberta [Reference Oster, Bruno, Montour, Roasting, Lightning and Rain20]. Interview findings showed that strong relationships, cultural understanding, and a sense of trust and non-judgement were key for First Nations women to receive effective prenatal care, while a lack of cultural appropriateness could lead to poorer outcomes and sustain health inequities. The study emphasised that time invested in such healthcare interactions to build relationships and trust should be standard and not viewed as extra [Reference Oster, Bruno, Montour, Roasting, Lightning and Rain20]. The authors encouraged healthcare providers to actively engage with local Indigenous communities, stressing that reviewing literature or completing cultural competency courses is not enough to gain meaningful understandings of Indigenous experiences. By using a CBPR approach, the ENRICH team and the Cree First Nations community have built a strong research–community partnership that can investigate and address important health issues to improve the overall well-being of the Indigenous community.

Another example of research–community collaboration is the Abuela, Mamá y Yo (AMY) project. The AMY project was established by a partnership between the Oregon Health and Science University and Familias en Acción, a non-governmental community organisation focused on the health of Latino families in Oregon, the United States. The research-based programme partners with Latinx families and Latinx-serving organisations and is centred on DOHaD and intergenerational well-being, recognising the high rates of obesity and type 2 diabetes in the local Latino community [21]. Abuela, Mamá y Yo provides a culturally specific food equity nutrition education programme that addresses the root causes of health inequities and builds participants’ knowledge around upstream determinants [21]. Community leaders have been trained to facilitate the AMY curriculum in community classes with core topics including the first 1000 days, breastfeeding, and decolonising food systems [Reference Arnold, Márquez, Gurrola, Ventura and Mamá y22, Reference Gautom and Richardson23]. Although evaluation is ongoing, initial mixed methods research, including pre- and post-surveys, has reported an increase in participant knowledge across all topics, particularly in relation to the first 1000 days concept. Similarly to other CBPR approaches in the DOHaD field, AMY researchers acknowledge the benefits of close community partnership, including the ability to constantly adapt and tailor to the community’s needs, ensuring their work is relevant and impactful for the population of interest [Reference Arnold, Márquez, Gurrola, Ventura and Mamá y22].

These research–community partnerships emphasise the importance of strong and sustained relationships in DOHaD research. This process can be particularly impactful for Indigenous and/or low- and middle-income communities where there may be mistrust due to past experiences of exploitative, one-sided research. Simply presenting to a community and requesting permission to undertake a research proposal is inadequate [Reference O’Donahoo and Ross24]. Community engagement and collaboration before a proposal is created and throughout each stage of research can ensure respect and integrity. Such collaborations build a greater level of trust and can strengthen ‘buy-in’ or willingness to participate in studies. When communities are actively leading research, there can also be a better understanding of where research needs to be targeted. The participatory DOHaD projects above describe how continuous feedback loops enable communities to contribute perspective and guidance regarding research directions and issues of local relevance and ultimately lead to the translation of evidence into action. CBPR approaches that co-construct research priorities and co-design studies ensure that the dignity of communities is upheld and can result in more relevant and impactful interventions. This is particularly important for Indigenous, historically marginalised, and low-income communities that are often disproportionately impacted by risk factors and, as a result, can experience poorer health outcomes.

18.3 A Case Study in the Cook Islands

We have previously published a systematic review that found a lack of DOHaD research occurring in low- and middle-income countries, particularly within the Pacific region [Reference Tu’akoi, Vickers and Bay5]. The Cook Islands, with a resident population of 14,802, is one such Pacific nation that lacks research into DOHaD and early-life causes, despite experiencing some of the highest rates of NCDs and related-risk factors worldwide. Through a CBPR partnership focused on addressing these health challenges, researchers and the Cook Islands community co-developed research questions, data collection methods, and ways of knowledge translation. This section outlines the background of our Cook Islands partnership and the importance of using local models in research and explores a selection of research studies that have been carried out under this collaboration.

18.3.1 The Cook Islands

The Cook Islands is a self-governing state in free association with New Zealand. Its current health status is greatly influenced by a history of colonisation, Westernisation, and changing trade policies. Food imports have increased considerably since the late twentieth century, influencing a nutrition transition from traditional diets sourced from the land and ocean to more processed foods high in fat and sugar [Reference Ulijaszek25]. Approximately, 88.5 per cent of adults aged 18–64 years old are overweight and 61.4 per cent are obese [26]. Insufficient physical activity is reported among 33 per cent of adults, raised blood pressure affects 28.5 per cent, and raised blood glucose levels impact 23.5 per cent of adults [26]. Non-communicable diseases affect approximately 30 per cent of the population and contribute to 80 per cent of all deaths in the country, 36 per cent of which occur before 60 years old [27]. Risk factors among younger age groups are also of concern, with a 2015 global school health survey reporting 63.7 per cent of Cook Islands students aged 13–17 years were overweight/obese [28]. Although biannual school health checks are conducted in the Cook Islands to assess body mass index, lice, and skin conditions, there was a lack of in-depth data on metabolic health and, concurrently, no data on how this might be influenced by the early-life environment. This gap was identified, and action was taken to begin to address it within the work of The Pacific Science for Health Literacy Project (PSHLP) [29], a CBPR partnership between researchers, health professionals, educators, and community members.

The Pacific Science for Health Literacy Project is a multi-sectoral community-based participatory research project established initially across partners in the Cook Islands, Tonga, and New Zealand, and currently in action via an ongoing partnership between the Cook Islands Ministry of Education, Te Marae Ora Cook Islands Ministry of Health, and the Liggins Institute, University of Auckland. The partnership was established in 2012 via a pre-feasibility grant from the New Zealand Ministry of Foreign Affairs and Trade, which identified perceived commonalities in goals between potential partners, those being the Ministries of Education and Health in Tonga and the Cook Islands, and the University of Auckland’s Liggins Institute in New Zealand. Staff from the Ministry of Foreign Affairs and Trade in New Zealand, Tonga, and the Cook Islands facilitated partner introductions over a period of four months, resulting in an agreement to enter into a six-month pre-feasibility study. The purpose of this study was to build relationships by enabling potential partners to meet, share, and listen, examine the potential of a partnership, and, importantly, co-write a grant application for pilot funding [Reference Bay and MacIntyre30].

The PSHLP phase I pilot was funded from 2013 to 2016 and extended through to 2017, examining the potential of the school curriculum for developing scientific, sociological, and health literacies and facilitating adolescent-led actions [Reference Bay, Yaqona, Oyamada, Sata, Fukuoka and Hanson31]. Learning programmes were established that facilitated this development via the exploration of local community health challenges such as diabetes, obesity, and nutrition. This included examining the science of DOHaD using local and international evidence. By involving teachers from science, health and physical education, and social sciences, the programme encouraged the examination of issues from a systems perspective while also promoting educational goals associated with assessing multiple perspectives in relation to complex issues [Reference Barrett-Watson and Bay32Reference Bay and Yaqona34]. Engagement in the programme encouraged further locally led questions and provided opportunities for research capability development. In 2016, the funder and community representatives decided that a deliberation process should be undertaken to identify whether and how the programme should be developed. Stakeholders including community leaders, health and education experts, parents, diplomats, and representees from non-governmental organisations and government agencies such as sport, child development, and agriculture met over a period of two days. This resulted in a plan to again work in partnership to propose the next phase of this CBPR and seek funding. Achieving funding to scale up took a further two years, during which time all partner schools from the pilot continued to use and grow the programmes. Resourcing partnership building and acknowledging the importance of local evidence guided by local frameworks that can inform community interventions and policies is key to effective CBPR.

18.3.2 Local Models and Methodologies

Research conducted using mainstream research frameworks and resulting programmes often have limited transferability for Indigenous and historically marginalised communities [Reference Chino and DeBruyn35]. Framing research using local customs, traditions, and ways of knowing is one way to ensure it is contextualised and culturally relevant to the community of interest. Cook Islands collaborators within the PSHLP discussed the importance of utilising local frameworks and methodologies to ensure the research had a strong foundation in local knowledge. Oraanga pitoenua, or health and well-being, is a holistic concept in the Cook Islands that refers to what makes people healthy, happy, and well [Reference Bay and Yaqona34]. The five dimensions include kopapa (physical well-being), tu manako (mental and emotional well-being), vaerua (spiritual well-being), kopu tangata (social well-being), and aorangi (total environment) [Reference Bay and Yaqona34]. Like other holistic health models, oraanga pitoenua includes considerations for the health of one’s body, thoughts and feelings, values, and beliefs, and for social and family relationships. It also incorporates aorangi and the recognition that one’s connections with the land, the sky, and the ocean are important aspects of holistic health and well-being. This concept of oraanga pitoenua was central to the adolescent health research conducted in the Cook Islands, acknowledging that well-being is not simply an individual issue but related to our community relationships and connections to the environment.

Another key framework used in this research was the Tivaevae model, a Cook Islands research methodology first established by Teremoana Maua-Hodges in 1999 [Reference Maua-Hodges36]. The framework uses the traditional tivaevae quilt-making process as a metaphor for a collaborative approach to research [Reference Futter-Puati and Maua-Hodges37]. In the Cook Islands, tivaevae are colourful, hand-sewn patchwork quilts commonly created by a group of women and led by one ta’unga (expert). The three key stages of tivaevae-making are 1. Koikoi (picking), the preparation stage where patterns for the quilt are discussed and selected, 2. Tuitui (stitching), whereby patterns are stitched together and sewn onto the blank canvas, and 3. Akairianga (reviewing), where the completed tivaevae are gifted or displayed at birthdays, graduations, and other special occasions [Reference Te Ava and Page38]. Five key principles underpin this tivaevae-making process: taokotai (collaboration), akairi kite (shared vision), tu inangaro (relationships), uriuri kite (reciprocity), and tu akangateitei (respect). The Tivaevae model applies this same process and key principles to research. Koikoi represents the initial stages of a research project where collaborations, ideas, and knowledge sharing occur to conceptualise research questions and plan a project. Tuitui is the ‘making’ stage of research where data are collected, analysed, and interpreted to create a story. Akairianga refers to disseminating research findings and determining how the evidence can be translated into real outcomes for the community. The Tivaevae model ensured PSHLP research was grounded in local Cook Island ways of knowing and emphasised the importance of having a shared vision and reciprocal relationships between researchers and the community.

18.3.3 Partnerships for DOHaD Research

The PSHLP partnership between researchers and the Cook Islands community embedded the Tivaevae model and local concepts of oraanga pitoenua from the beginning of the research process. As discussed previously, the PSHLP was formed to support health and science literacies within Cook Islands schools. Over time, knowledge sharing and collaborative discussions of DOHaD resulted in local partners questioning why there was no local evidence, given the high rates of NCDs and related risk factors. Cook Islands students participating in the PSHLP learning programme at school also began to consider the lack of local evidence and became increasingly interested in having access to and understanding their own health data. These discussions from Cook Islands students, educators, and health professionals within the PSHLP led to a research project aimed at extending local adolescent health measurements, linking these back to birth records to explore potential DOHaD associations and considering how to translate this evidence into positive outcomes for students themselves and the wider community.

We have previously published a short report on the process and key results from this initial study [Reference Tu’akoi, Bay, Aung, Tamarua-Herman, Barrett-Watson and Tairea39]. Educators, health professionals, and researchers worked together to facilitate and measure a range of health indicators among Year 9 adolescents (approximately 13 years old) in Cook Islands high schools from 2016 to 2018. Measures included height, weight, waist circumference, blood pressure, blood glucose, and total cholesterol levels. To support participating adolescents in understanding and having access to their own data, the PSHLP team co-created a resource named ‘My Health Profile’ where students could record and chart their measurements, alongside simple, informative health facts [Reference Herman, Tairea and Bay40]. Teachers supported the development of these understandings during class time. Of the 195 students included in the study, our findings showed that approximately 68 per cent were overweight/obese, 46 per cent were affected by central obesity, and 43 per cent had raised blood pressure [Reference Tu’akoi, Bay, Aung, Tamarua-Herman, Barrett-Watson and Tairea39]. When linked with birth data, this study found a significant inverse association between birthweight and central obesity in Rarotongan adolescents. Data sense-making workshops with collaborators and community members emphasised the potential for DOHaD and investment into the early-life environment in the Cook Islands in order to optimise oraanga pitoenua later in life and across generations. They also recognised key areas of improvement for future research, including larger sample sizes, increasing the accuracy of measures, and further exploring the influence of school, home, and community contexts.

A key part of the Tivaevae model is akairianga, referring to the appropriate dissemination and knowledge translation of the evidence collected. Collaborators discussed how the local early-life data collected in addition to international evidence could be translated into positive outcomes for the community. A key discussion point was the need to increase community awareness of early-life concepts and provide an easily accessible, localised resource for new mothers, fathers, and families. We have previously published a paper that reports the CBPR process we undertook with a range of professional and lay groups in Rarotonga, Cook Islands, in order to co-design a local early-life resource [Reference Tu’akoi, Tamarua-Herman, Tairea, Vickers, Aung and Bay41]. With recruitment led by our Cook Islands collaborators, we conducted a series of collaborative focus group workshops with the House of Ariki and Koutu Nui (traditional chiefs and leaders in the Cook Islands), health professionals, pregnant women, current mothers of young children, Takamoa Theological College students, the Cook Islands National Youth Council, Internal Affairs, and the Child Welfare Association. After a series of co-designing workshops and draft reviews, a finalised resource titled ‘Lifelong health: Our Tamariki’ was created. Participants discussed the lack of physical resources available to expecting mothers and fathers, particularly emphasising the lack of locally relevant, contextualised information. They expressed that Cook Islanders would be able to relate to and form an attachment with the finalised resource and that it would help to start the conversation of nutrition, early-life health, and intergenerational impacts [Reference Tu’akoi, Tamarua-Herman, Tairea, Vickers, Aung and Bay41]. Although initially delayed by COVID-19, research is underway to assess the understanding of DOHaD and early-life concepts in the community both before and after the booklet is released. Local collaborators are also planning the initial launch of the resource in the community and its distribution to antenatal clinics, workplaces, and high schools across the islands.

The research described above is just a portion of the ongoing PSHLP work in the Cook Islands with other studies including investigations into adolescent physical activity levels, mental health, and the co-development of other health literacy resources as requested by the community. The CBPR approach has enabled strong relationships and reciprocal exchanges of knowledge between researchers and community members. Local partners set research directions that they feel are important and relevant for their community. Side-by-side collaboration throughout data collection and interpretation phases not only enabled ‘buy-in’ but also allowed for insight into relevant contextual factors that may explain specific data trends. Taking a CBPR approach has also proved beneficial for research translation. Ensuring the community was involved from the beginning helped to increase the acceptability of findings and strengthen community-led action. The views held among communities are not always homogenous, and thus it is important that this process of building and maintaining relationships is given the necessary time and breadth. CBPR is an approach that respects the dignity of local communities, prioritises shared power and reciprocal knowledge, and can ensure research evidence is translated to be impactful.

18.4 Future for CBPR in DOHaD

Although there is increasing recognition from researchers in the DOHaD field about the need to conduct research alongside community partners, projects where this has occurred remain limited. This may be due to the challenges of developing strong community engagement. First and foremost, building relationships and trust with a community can be a lengthy and sometimes difficult process. Many communities already harbour a mistrust of science and research due to historical experiences of exploitation. Developing strong, trusting relationships should therefore be a long-term commitment and is not typically acknowledged under the traditional role of a researcher [Reference Holkup, Tripp-Reimer, Salois and Weinert7]. Additionally, as funding structures require a research proposal to be set out before funding is allocated, this can lead to many hours of unpaid work to develop strong collaborations with communities that can then together put forward a project proposal. However, ensuring a ‘cyclical and iterative process’ where research projects are able to be sustainable and fully owned by the community to ensure continuation beyond research funding limits is important and achievable via CBPR [Reference Holkup, Tripp-Reimer, Salois and Weinert7]. Regardless of the challenges, there is a need for more DOHaD research to adopt CBPR moving forward. The current examples in the DOHaD field typically relate to community awareness or education programmes within Indigenous and historically marginalised communities. While this is important and needed, researchers outside these spaces should also consider adopting CBPR principles and local cultural models for both quantitative and qualitative DOHaD research to ensure relevancy and contextually appropriate outcomes. CBPR can ensure the reciprocal sharing of different forms of knowledge, develop capabilities, and contribute to improving overall health and well-being.

18.5 Conclusion

Community-based participatory research aims for equal partnership and sharing of knowledge between researchers and communities. It has its foundations in social justice and empowerment and can be used to build trust and capabilities in underprivileged communities. There are examples in the DOHaD field of how CBPR positively guides how research is conducted. Our own work in the Cook Islands shows that CBPR relationships may develop slowly and over a long time. However, what can result is a community that is empowered to learn, ask questions, and make positive social changes, and researchers that can also learn and adapt research contextually. Institutions and funding bodies should acknowledge and promote such forms of collaborative partnerships to ensure that research can be appropriately conducted and sustainably embedded with the goal of improving long-term and intergenerational well-being.

Chapter 19 The First 1000 Days and Clinical Practice in Infant Mental Health

Anusha Lachman , Astrid Berg , Fiona C. Ross , and Simone M. Peters
19.1 Introduction

The chapter begins with two premises. First, infancy is a crucial time in human development, both physically and cognitive-affectively. During the first three years of life, the infant develops from being helpless and absolutely dependent to being able to move independently and make its needs known through language. In this time, the foundations are laid for socio-emotional and cognitive development. These premises are confirmed in DOHaD research, where the earliest period of life has clearly been demonstrated to be significant in shaping individual health over the life cycle and intergenerationally, and thence shaping population health over time. The second premise arises from the recognition by the World Health Organization (WHO) that mental health is a right. It is included in the United Nations Sustainable Development Goals (SDGs), where Goal 3 makes explicit its significance for the accomplishment of other goals [Reference Patel, Saxena, Lund†, Thornicroft and Baingana1]. The latest State of the World’s Children Report [2] specifically focuses on children’s mental health.

A large body of research suggests that some aspects of mental health and illness may be heritable. There is also clear evidence that environmental factors in the perinatal period can have durable effects on cognitive and emotional development and function and that infancy and the perinatal period offer opportunities to identify and ameliorate such effects [Reference Monk, Spicer and Champagne3]. The DOHaD-inspired ‘first 1000 days of life’ campaigns, for example, indicate the potential to alter developmental trajectories and protect children against environmental risk factors through early intervention. There is also growing recognition that supportive social relations in the early period promote adaptive cognitive and emotional functioning over time and potentially through the generations. The WHO et al.’s [4] endorsement of ‘nurturing care’ is a recognition of how material and emotional care produce improved long-term individual and social outcomes. These include better social relationships and psychological stability and improved schooling outcomes. In the longer term, they are assumed to result in greater work productivity and economic stability. So compelling are the findings that the Lancet Commission on Mental Health identifies child and youth mental health as ‘a moral imperative’ (1 p1578). This gives impetus to work that seeks to support caring relations and ameliorate the conditions under which human development takes place.

19.2 Why Infants? Infant Mental Health and Well-Being

Infant mental health refers to the ‘young child’s capacity to experience, regulate, and express emotions, form close and secure relationships, and explore the environment and learn’ [Reference Zeanah, Zeanah and Zeanah5, p. 6].

Like DOHaD, infant mental health (IMH) is a convergent field of study, informed by multiple disciplines, including paediatrics, allied medical disciplines, developmental psychology, psychiatry, neuroscience, clinical practice, and public mental health advocacy. As such, it cuts across disciplines, giving it a broad and inclusive foundation for research and implementation. Its aim is to identify and enable positive developmental trajectories for children [Reference Zeanah, Zeanah and Zeanah5]. Its central tenet is that the human infant is born with a capacity to explore the environment, learn, experience, and express emotions. While learning is lifelong, the plasticity of the developing brain makes early childhood critical. From the start, in utero, the infant takes in and absorbs the stimuli from its environment and gradually forms internal images and representations in its mind of what it means and what it requires to be a member of a particular community. Far from being a blank slate or tabula rasa, the infant comes into this world with a ‘story’ and sensory experience [Reference Marx and Nagy6].

Cognitive well-being and affective stability are critical to adaptive responses to the world and, in addition to their individual effects, are seen by developmental practitioners as central to the making of stable societies and productive workforces. For these capacities to unfold, the baby requires human relationships. Infant mental health thus takes as its central concern the relationship between infants and caregivers. The emphasis on relations is vital, marking an important shift away from the focus on individual psychological disturbance to a concern with the promotion of infant well-being and flourishing within the networks of relations that comprise their lives. To theorise this, IMH draws on developmental psychology, particularly attachment theory, in explaining well-being and promoting secure relationships that form the basis of social and intellectual functioning.

While it is not always thought of as DOHAD research, there is considerable evidence from multiple fields that demonstrates that the early social environment is an important shaper, sometimes determinant, of early child psychological development, which in turn influences long-term child health outcomes [Reference Maggi, Irwin, Siddiqi and Hertzman7, Reference Richter, Orkin, Adair, Kroker-Lobos, Mayol, Menezes and Victora8]. A robust body of scholarship shows that stressors during early development (including prenatally) can affect cognitive and emotional development and generate mental health problems that endure into or may only fully materialise in adulthood [Reference Shonkoff and Garner9]. Stressors produce neuro-biological effects that have lasting, potentially heritable effects on mental health [Reference Schmidt, Burack and Van Lieshout10]. Different kinds of stressors at different times in development may have different effects and different outcomes [Reference Cameron, Eagleson, Fox, Hensch and Levitt11]. Specific biological and chemical pathways are disputed [Reference O’Donnell and Meaney12] and are still under investigation [Reference Huizink and De Rooij13]. Some of these findings are also attributable to the broader socio-economic circumstances under which children are raised. In addition to these influences, there is growing attention to the possibilities of transgenerational transmission of mental health risks and illness. This may be a result of genetic inheritance, epigenetic processes [Reference Taouk and Schulkin14], and/or because affected adults may be less able to provide secure environments for raising children, particularly where social-political-economic circumstances are inhospitable.

The interplay between genetic predispositions and the physical and psycho-social environment thus lays the foundations for mental and physical health [Reference Shonkoff, Slopen and Williams15]. Infant mental health understands that these are mediated by relations in context. The emphasis on relations is critical. Relationships are embedded in context, and we suggest that more attention needs to be paid to the latter. In the remainder of the chapter, we explore contextual factors significant for infant mental health before turning to our work on localising the model of IMH, a process we characterise as attunement to context. The latter seeks to enable a picture of well-being that has resonance and efficacy in the contexts in which we work in southern Africa and that has the potential to shift the gamut of social relations to enable better support of infants and their relational worlds.

19.3 Exposure and Resilience

While the epigenetic and neurobiological processes that shape outcomes are still under investigation, knowledge of the effects of psycho-social stressors in infancy on child and adult mental health has a history that predates DOHaD. Socio-economic factors are particularly significant. There is a substantially higher prevalence of common perinatal mental health disorders in low- and middle-income countries (LMICs) than in higher income countries, particularly in poorer peri-urban and rural areas [Reference Fisher, Mello, Patel, Rahman, Tran, Holton and Holmes16, Reference Brittain, Myer, Koen, Koopowitz, Donald and Barnett17]. Mother–infant dyads in LMICs may be exposed to multiple cumulative environmental factors that may confer risk on infant outcomes. Parental capacity to provide the kind of care that promotes security in infancy and good developmental outcomes can be severely compromised in adverse conditions such as poverty, particularly when mothers are themselves at risk for mental health disorders [Reference Patel, Flisher, Nikapota and Malhotra18]. Concern has been raised about the links between maternal stress and later mental health disorders in children, including, among others, attention deficit hyperactivity disorders (ADHD), depression, and poor development of linguistic, cognitive, and socio-emotional skills [Reference Shonkoff and Garner9].

In South Africa, for example, poverty, inequality, insecurity, and gender-based violence produce and compound very high rates of perinatal depression and anxiety and mental illness [Reference Redinger, Pearson, Houle, Norris and Rochat19, Reference Honikman, Sigwebela, Schneider and Field20]. Risks appear to be cumulative: for example, shocks in early childhood are correlated with a greater risk of mental illness in adulthood [2, Reference Tomlinson, Kleintjes and Lake21]. Research on Adverse Childhood Experiences suggests that there is a ‘graded relationship’ between early exposure to emotional, physical, and sexual abuse and later disease and risk behaviours [Reference Feletti, Anda, Nordenberg, Williamson, Spitz and Edwards22]. More recent cohort studies in South Africa have suggested that there is a graded relationship between ACEs, adult ill health, and adult risk behaviours including antisocial behaviours.

Longitudinal studies are increasingly showing the effects of early life experiences, particularly toxic stress, on development [Reference Lyons-Ruth, Bureau, Easterbrooks, Obsuth, Hennighausen and Vulliez-Coady23, Reference Beebe and Lachmann24]. There is robust evidence pointing to the transmission of maternal (and some paternal) factors in mental ill health, especially regarding the links between maternal depression and stress and child development. However, the precise mechanisms remain complex. In a review, Wan and Green [Reference Wan and Green25] highlighted that most children of mothers with mental health problems do not inevitably develop lasting attachment difficulties. While children in settings of vulnerability (social adversity and caregiver mental illness) may be at higher risk of developing relational difficulties, many go on to develop positive developmental outcomes and secure attachments, indicating that childhood resilience may be facilitated by the efforts of mothers and others to mitigate the immediate and potential impact of maternal mental illness [Reference Cooper, Tomlinson, Swartz, Landman, Molteno and Stein26].

Indeed, evidence from the cognate fields of psychiatry, psychology, and child development [Reference Zeanah, Zeanah and Zeanah5] clearly demonstrates that the kinds of insults described above can be partially offset by attentive care practices. These are presumed to provide the grounds for secure relating that in turn sets in motion processes of resilient adaptation shown to be critical in long-term health. A large body of evidence demonstrates that attachment relations between the infant and the caregiver are critical for physical survival, optimal development of the brain, and resilience through the lifecourse. Interventions in this early sensitive phase of life have been shown to promote well-being in a more effective way than interventions later in the life cycle.

This is a critical concern for international organisations such as UNICEF, Save the Children, and the WHO, among others, which have become increasingly focused on ‘parenting’ to ameliorate or offset social shocks and promote resilience and social competence. It is important that ‘parenting’ be understood as a component of the infant’s environment and not as the solution for factors that lie well beyond parental control. This suggests that we need to pay critical attention to how to theorise the contexts and environments that shape exposures and resilience. Given the emphasis on ‘environment’ in DOHAD research, this should not come as a surprise.

19.4 Universalist Models and Local Contexts

As Zeanah and Zeanah note, ‘One of the most distinctive features of the early years is the clear importance of multiple interrelated contexts (e.g. caregiver–infant relationship, family, cultural, social, and historical) within which infants develop’ [Reference Zeanah, Zeanah and Zeanah5, p. 19]. How we theorise those relationships and their ‘multiple, interrelated contexts’ matters, as do the assumptions we make about their role in well-being. Much of what has been written on human development has been drawn from populations from Western, educated, industrialised, rich and democratic (WEIRD) societies [Reference Henrich, Heine and Norenzayan27]. This leaves out or ignores the majority of the world’s infants and young children. It also means that much of what has been ‘evidence-based’ comes from a biased and limited sample. Work from South Africa, particularly from the Parent-Infant Mental Health Service in Cape Town [Reference Berg28] and the Ububele Umdlezane Parent-Infant Project in Johannesburg [Reference Frost29], and from ongoing practical work in parenting centres, child support services, and perinatal healthcare projects, suggests that care needs to be taken in how we understand the formative influences on babies of the specific social worlds around them. Contextual factors, including ongoing legacies of racism and social inequalities, combined with cultural variations in ideas about parenting, childrearing, and diverse family structures, make it difficult to apply a ‘one-size-fits-all’ approach to understanding IMH and the interventions needed to support and protect it. This is an important consideration for DOHaD scholarship, especially as questions about how to understand and investigate the ‘environment’ and its press on partly permeable bodies become more critical [Reference Lock, Seeberg, Roepstorff and Meinert30].

Take, for example, the assumptions about kinship embedded in theoretical models animating IMH. Attachment theory anticipates that a child learns the security from which to explore the world with confidence from its primary caregiver’s arms. This caregiver is frequently posited to be the mother – as is often the case. But it is also the case that many people are involved in childcare, especially after an early period of seclusion. Some are recognised in the literature: female relatives such as aunts and grandmothers; people employed to offer care, such as nannies and workers in early childhood development centres [Reference Dugmore31, Reference Armstrong32]. Much less recognised are the informal networks of adults and older children whose supportive care generates a wide social net for children – as Keller and Chaudhary [Reference Keller, Chaudhary, Keller and Bard33] call it, ‘cradles of care’ – that can be endangered if it is not recognised as part of social and emotional well-being. While the responsibility of infant care rests mainly with adult caregivers, in many places, younger generations share in childcare roles. These in turn are dependent on the immediate and distal social environment in which they live. Economic hardship or ease, disadvantages, cultural norms and values, and political circumstances impact the parent and other caregivers and the relationship with the infant. As a common African proverb has it, ‘It takes a village to raise a child’. Indeed, it was precisely this proverb that was used in South Africa to launch a Provincial First Thousand Days Campaign in 2016 that seeks to undo historical legacies of ill health, particularly stunting, through close attention to infant well-being.

The impact of historical factors on structures supporting infant well-being is particularly significant in the southern African context. For example, the migrant labour system that long characterised family life for many Black South Africans and those in neighbouring states has produced complex familial arrangements across the region. The HIV pandemic that, until relatively recently, produced mass illness and death in the absence of antiretro viral drugs, shifted caring practices to a wider range of kin and other networks, some of which became tightly stretched in impoverished contexts. Ongoing political instabilities and economic insecurities in the subregion generate considerable mobility in family life, including ongoing separations of mothers and babies. The resultant social forms are not the simple ‘nuclear family’ long presumed to be desirable and normative, but complex and shifting adaptations to changing circumstances. And indeed, there is growing evidence that the nuclear family itself, on which much developmental theory rests, makes caring effectively for children much more difficult than is the case in more complex households – the same households that have long been stigmatised for their deviation from the nuclear model [Reference Voges, Berg and Niehaus34]. There is therefore a need to factor into our models of well-being the diverse sources from which children receive nurturing care while still recognising and supporting the primary (dyadic) caregivers. Doing so presents a more accurate perspective on the environments that support children and complicates an overly simplistic equation of relations as solely dyadic and the ‘woman as environment model’ that has, until recently, beset DOHaD research [Reference Richardson, Richardson and Stevens35, Reference Pentecost and Ross36].

While DOHaD research has largely focused on the effects of maternal factors on epigenetics and neuropsychological development, there is growing interest in the paternal factors [Reference Soubry37]. Similarly, in psychiatry, there is a small but growing body of research that explores paternal factors on infant well-being [Reference Fisher38]. This suggests that a father(-figure)’s mental state affects infants directly (through inheritance and parenting practices) and indirectly (through the effects of mental illness on family stability and emotional tenor) and contributes to infants’ internalising and externalising behaviours. Lasting consequences include the risk of child psychopathology [ibid.].

In psychology, although there was early recognition that infants attach to their fathers as well, most research has also focused on the mother–child dyad. More recent scholarship on paternity demonstrates that fathers affect the infant’s well-being both indirectly and directly [Reference Bingham, Loukas, Fitzgerald and Zucker39] and that positive infant–father relationships result in healthy emotional and social outcomes for the infant [Reference Henry, Julion, Bounds and Sumo40] and over the lifecourse [Reference Jackson41, Reference McKee, Stapleton and Pidgeon42]. The father’s relationship with the infant’s mother indirectly affects the infant’s well-being. Indeed, research conducted in Soweto, South Africa [Reference Drysdale, Slemming, Makusha and Richter43], concluded that father involvement may reduce postnatal maternal depression and improve maternal mental health, with important implications for infant well-being.

Well-being needs to be broadly understood. In many parts of southern Africa, it is the father’s responsibility to ensure the incorporation of the child into meaningful social worlds and secure wider sets of relationships. Andile Mayekiso describes this as ‘social attachment’: the work of enabling cultural identifications and securing social well-being through the rituals that identification enjoins [Reference Mayekiso44]. In contexts where historical processes have shattered family life, the absence of a paternal figure whose kin can be relied on to structure belonging may have severe mental health consequences. And yet, despite the significance of the paternal role in an infant’s life, men are still marginalised in both practices of parent–infant psychotherapy and psychoanalytic and IMH theory [Reference Baradon45].

19.5 Translation to the Clinical Setting: Increasing Awareness and Increasing Knowledge

The reality for many South African infants and young children, and indeed children in much of the world – including in some of the world’s richest countries – remains one of significant deprivation. Beyond the drivers of socio-economic disadvantage, access to quality healthcare and mental health services – in particular, for caregivers – remains neglected and under-resourced. Limited mental health resources (including both physical structures and human resources) impact clinicians’ abilities to screen and offer support, referrals, and appropriate early interventions.

In South African public health, there has been tragically poor investment in mental health services and support at both community and district levels [Reference Lund, Petersen, Kleintjes and Bhana46, Reference Bain47]. While our IMH training programme (described below) responds to the need for awareness and upskilling of local care providers at a grassroots level, the ability to integrate screening and support of infants at risk remains out of reach. Health and family support network providers are faced with a difficult choice: to identify problematic or at-risk dyads early but be limited in what they can be offered or to continue to focus on purely physical and social risks that can be addressed within a resource-constrained system. With task shifting/sharingFootnote 1 being one of the key focus areas of the SDGs, we believe the answer may lie in innovative approaches that attempt to upskill existing allied and support workers to identify mental health risks in their standard practices of care and to adapt treatment models to this and similar settings. This has the potential to bring mental health into the mainstream of everyday clinical practice. So, if infants are routinely weighed, immunised, and assessed for physical health conditions at local clinics, an IMH-friendly approach would then include additional questioning around the relationship and interactions of the infant and caregiver. Caregiver mental health screening is then included as part of the infant health screening, true to IMH’s relational underpinnings. Where health practitioners are attuned to cultural values, practices, and historical circumstances, this can also contribute to aligning scientific knowledge about infant well-being to specific contexts, helping to create the localised ‘nurturing care’ imagined in global health discourse.

To bring awareness of IMH into everyday clinical practice, we needed a simple screening tool that would blend in with existing local conditions and practices. Drawing from European work on caregiver and infant screening at the primary healthcare level, Puura, Berg, and Malek developed the Basic IMH Screen (BIMHS) [Reference Puura, Malek and Berg48], a five-item tool that can be readily identified by a primary HCW. Items are ‘basic’ in the sense of being universally present or valid for infants and their caregivers. They are embedded in and form an implicit sine qua non in the World Association of Infant Mental Health Position Paper on the Rights of Infants [49].

The items consist of two simple questions for the mother/primary caregiver: Are you worried about your infant/child? How have you been feeling? The third item is the weight of the infant that is routinely plotted on a growth chart. The fourth and fifth items are simple observations of the infant’s eye contact with the caregiver or health worker, and moments of shared pleasure between the infant and caregiver. The last item is the intuitive sense of the HCW about the dyad: is the relationship between the two of concern or not?

If there is concern about any of these items, the caregiver may be given an earlier appointment to determine whether the concern persists or not. Only after several such checks, should the infant be followed up at a more specialised clinic or service. The BIMHS is thus meant to ‘flag’ vulnerable dyads and to provide them with additional support, which, if given early enough, may prevent a less-than-optimal trajectory.

The BIMHS has been incorporated by the Western Cape Provincial Department of Health into existing maternal and infant screening tools as part of a DOHaD-inspired focus on the first thousand days of life.

In environments characterised by inequality, support in this respect can be significant, although it does not outweigh the importance of structural reform for population-level effects. This is particularly true where mental health challenges in the perinatal period continue to be overshadowed by complex systemic issues in health systems. These include a lack of resourcing, limited collaborative care between obstetric antenatal and psychiatric services, stigma, cultural misconceptions, and a lack of accessible and sustainable service delivery models. They can be partly addressed by general and mental healthcare professionals encouraging an awareness of the impact of perinatal mental health on early IMH, as well as early dyadic screening and intervention, and careful attention to cultural and social factors shaping infant potential and well-being.

19.6 Developing Comprehensive Approaches to IMH

In stark contrast to international standards of care espoused by high-income countries (HICs) and international organisations such as the WHO and UNICEF, the African continent offered no professional postgraduate degrees focusing on IMH until the development of a structured master’s degree programme at Stellenbosch University to attempt to address this need [Reference Berg and Lachman50]. This programme applies social medicine principles to train interdisciplinary practitioners to enter a diverse workspace, with the intention of integrating IMH-specific approaches into existing clinical offerings. Its diverse curriculum addresses human development, social and mental health influences on parenting practices, and accommodates both professional diversity and cultural diversity. It aims to develop interdisciplinary practitioners skilled in clinical observation and screening while also contributing to the critical local research agenda in the IMH field.

The ways that care, attachment, and relationships form and are understood in everyday practices are not universal. This raises the challenge of developing teaching models and course content to reflect local practice while remaining true to the core principles of the field of IMH. The ambitious degree programme has navigated pedagogic and logistical challenges in training and assessment methods, content applicability, and competency evaluation. Legacies of economic, social, and political disadvantage in South Africa continue to impact higher education and training, especially in multiculturally diverse classrooms such as ours. Teaching faculty has to navigate sensitively, with awareness of an underlying English language and Eurocentric bias on pedagogy and outcome assessments. A critical stance is required when evaluating students within the field of their own training background (such as allied health and humanities) while integrating a new field of IMH (relying on psychological and biological health origins). The programme integrates alternative blended teaching methods with traditional coursework to accommodate students’ academic and professionally diverse backgrounds. The result has been a rich and evolving offering of a complex and diverse learning environment that speaks to the true cultural and ethnic diversity of South African students and the health-seeking population of its children.

Graduates of the MPhil programme integrate their learnings in context-specific health and psychological settings, including infant feeding clinics, well-baby immunisation visits, and mothers attending routine antenatal or assisted fertility services. This demonstrates the relative ease with which IMH can be included in standard packages of care, without requiring greater specialisation. This speaks to the true nature of IMH and its influence across sectors. Such findings can be applied to DOHaD interventions also.

There has been resistance. One of the main challenges in approaching an established subject field in Africa is the ability to share and contribute to the existing international literature. ‘Publish or perish’ has never been more relevant than in the current climate. Yet there is resistance from peer-reviewed publication avenues to specific contextual offerings that are not considered favourably by or as being of interest to ‘global’ (i.e. American-Eurocentric) audiences [Reference Lachman, Berg, Ross and Pentecost51]. The field of IMH disproportionately favours a Eurocentric approach [Reference Tomlinson, Bornstein, Marlow and Swartz52]. This is a contentious issue for researchers in LMIC settings who struggle to balance the desire to produce locally relevant and culturally sensitive research with the need to accommodate Euro-American expectations and HIC contexts. Infant mental health work in Africa challenges that norm, desiring to develop a field and produce academic offerings originating in Africa and for Africa; offerings that are sensitive to the manifold ways people produce well-being in different contexts. In localising the model of health, then, we seek to enable a picture of well-being that has resonance and efficacy in the contexts in which we work and may shift the gamut of social relations to enable better support of infants and their relational worlds. The model we have described here may be useful to DOHaD practitioners seeking to do the same.

19.7 Conclusion

Broad environmental factors – poverty, malnourishment, racism, interpersonal and structural violence, and inequality – are critical factors shaping mental well-being. Such environmental insults have lasting, possibly heritable effects. Research on brain development and plasticity suggests that early experience of positive dyadic and broader relational ties is critical in supporting infant well-being, promoting resilience, and potentially reducing rates of mental illness later in life. Relationships are not only outer social connections but are also evident as inner neural brain circuitry in every individual. The context and relationships that each infant is born into give meaning and voice to this complex matrix of inner and outer and bind the subjective with the objective. There is here an important project in bridging the divide between the sciences of the brain and heredity and those of the psyche and relationship. Drawing from the literature and southern African experience, we suggest that approaches to human well-being that centre relationality both enable optimal outcomes and may map onto ontologies in much of the non-Western world. This in turn enables knowledge to be localised to specific conditions, something that is critical in DOHaD research. In southern Africa, understanding and supporting infant well-being requires attunement to the damaging effects of colonialism and postcolonial economic formations on family life and an effective training infrastructure. Southern scholarships, concerned with the interplay of power, history, and everyday life, can help to illuminate some of the more problematic assumptions about social environments and generate interventions that are reflective and responsive to local conditions. The result will be the culturally and socially adaptive approaches called for in the WHO’s Nurturing Care Framework, with particular emphasis on promoting secure relationships that are essential for future social and cognitive functioning.

Footnotes

Chapter 16 Translating Evidence to Policy The Challenge for DOHaD Advocacy

Chapter 17 Framing DOHaD for Policy and Society

CMJ is supported by the European Union’s Horizon 2020 LifeCycle Project under grant agreement No. 733206. MH is supported by the British Heart Foundation and the National Institute for Health Research, UK, through the Southampton Biomedical Research Centre. RM and MP were supported by the DFG German Research Foundation through the project ‘Situating Environmental Epigenetics’ (403161875). Both CMJ and MH are members of the Preconception Partnership and the Venice Forum.

1 Both networks have partly overlapping membership. For example, the first and last authors of this chapter have been actively involved in both networks. The Partnership and the Forum have also collaborated to write joint statements, for example, providing input into the call for evidence for the UK Women’s Health Strategy in 2021. This written input has focused on building a robust case for MNCH through measurement, monitoring, and better-quality data and implementation through a multi-sectoral approach, developing practical messages for the public and addressing ethnic and socio-economic disparities in women’s health.

Chapter 18 The Impact of Community-Based Participatory DOHaD Research

Chapter 19 The First 1000 Days and Clinical Practice in Infant Mental Health

1 Task shifting or task sharing refers to the re-allocation of healthcare tasks to non-traditional healthcare workers (HCWs) such as community HCWs and allied professionals. This is particularly important in low-resource settings.

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Figure 0

Table 17.1 Overview of the two advocacy networks

Figure 1

Figure 17.1 The framings used within groups and for communicating to an external audience are illustrated in the figure. Certain framings may have potentially negative consequences, while others have more positive effects as shown by the arrow.

Figure 2

Table 18.1 General principles of CBPR [9]