Invisible pursuit:

Global policy guidance on careof vulnerable infants under six
months and their mothers
A scoping review
April 2024

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Recommended citation

Authors

Marie McGrath, Stephanie V. Wrottesley, Eilise Brennan,
Amir Samnani and Hedwig Deconinck (2024). Invisible
pursuit: global policy guidance on care of vulnerable
infants under 6 months and their mothers, a scoping
review. Emergency Nutrition Network (ENN), Oxford, UK.
https://doi.org/10.6084/m9.figshare.25289917.v1

Marie McGrath (MMG)1, Stephanie V. Wrottesley (SVW)1,
Eilise Brennan (EB)1, Amir Samnani (AS)1, Hedwig
Deconinck (HD)1, 2
1	Emergency Nutrition Network (ENN), Kidlington,
Oxford, UK.
2	Institute of Health and Society, School of Public
Health, Université catholique de Louvain, Brussels,
Belgium.

Contributors statement

MMG and HD conceptualised the review. AS undertook
the first policy guidance search and classification, led
by SVW. SVW, supported by EB, undertook a further
classification and documentation of our process, led
by HD, in consultation with MMG. Responsive
methodology development was led by HD and MMG.
The discussion and conclusions were informed byco-author discussions led by MMG and HD.

Contact: mami@ennonline.net

Target audience
We expect that the content of this scoping review
will be of interest to public health policy-makers,
expert health and nutrition advisers, and technicalhealthcare professionals responsible for or involved in
the care of vulnerable infants under six months andtheir mothers, across policy, research and practice.

Key words

Newborn, infant, vulnerable, small, nutritionally at risk,
mother, malnourished, underweight, continuity ofcare, quality, policy guidance, guideline,
implementation.

Acknowledgements
We were able to undertake this work due to thegenerous support of the Bill & Melinda Gates
Foundation and the Department of Foreign Affairs,
Ireland. We thank our external reviewers (Louise Day(LD), Martha Mwangome (MM)) and internal reviewers(Phil James (PJ), Anne Walsh (AW) and Nicky Dent
(ND)) for taking the time to provide valuable feedback.
The ideas, opinions and comments included are
entirely the responsibility of the document’s authorsand do not necessarily represent or reflect thepolicies of the donors or those of our reviewers.

iInvisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Summary

Content tended to centre on conditions rather
than people. Integration ambition dealt more withintegration within services than between services,with little guidance on the ‘how’. Wider multisectoral
engagement was poorly addressed in the policy
documents. Most guidelines (20 out of 21) explicitly
targeted the infant, while seven incorporated
maternal aspects.

Many infants are born vulnerable, or become soin the first six months of their lives. These infants are
more susceptible to malnutrition and disease, andtherefore are at greater risk of poor growth anddevelopment, long-term ill-health and increased
mortality. The wellbeing of an infant is intimately
connected with that of their mother, and so is theircare. Vulnerable infants under six months (u6m)may be described by different stakeholders andpresent to services in many ways. There is a needfor comprehensive and respectful person-centredcare for vulnerable infants u6m and their mothers.
However, care is complex since it involves multiple
disciplines and actors across health, nutrition andsocial services.

We suspected and found that identifying relevant
policy guidance on care of vulnerable infants
u6m and their mothers was a fuzzy, messy andunpredictable process. We uncovered much valuable
content but we found that variable approaches anddescriptors obscure what is there. Low coverageof poor growth as a marker of risk was a surprisingshock that needs sorting, especially for infants with
LBW. Big gaps in maternal policy guidance also need
to be addressed and women’s care embedded ininfant-centric guidance.

To maximise time-sensitive opportunities thatcurrently exist for greater policy guidance in thisarea, we undertook a scoping review to investigate
the nature and coherence of global policy guidance
relevant to the care of vulnerable infants u6m andtheir mothers. We used the MAMI Care Pathway (anintegrated care pathway approach) as a guiding
framework to appraise how, for whom, and to what
extent policy guidance supports person-centred
continuity of care for vulnerable infants u6m andtheir mothers.

We urgently need greater policy coherence to guidecoherent practice. To help practitioners navigate thepolicy that exists it would be helpful to have a ‘live’
World Health Organisation (WHO) led policy platformto ‘join up the dots’, see what exists and what does
not exist, and to maximise the rich potential of ‘living
guidelines’. This will require institutional commitment
and resourcing for inter-departmental collaboration.
The reality is that global guidance will continue todevelop along specialities. Those developing policy
guidance at country level will need the wit and thewill to amalgamate what exists into feasible practicalguidance for services. A person-centred approachacross sectors and specialities is needed and will
help to convene services based on what people
need rather than on what we can do.

We used an iterative, responsive methodologicalapproach. We characterised and cross-examined
83 global policy guidance documents (identified
through public search, contacts and snowballing).
Through several steps and phases, we eventually
pinpointed 34 policy guidance documents (13guidelines and 21 guidance) for our full appraisal.
In this process we identified 46 ‘vulnerability factors’,
which we then consolidated into 28 vulnerability factorsthat we used to assess policy guidance coverage.
The most frequently addressed vulnerability factors(present in more than half of policy guidance) wereassociated with small and/or sick newborns (i.e.,
congenital illness, low birth weight (LBW), preterm),
infants’ breastfeeding difficulties and illness, andmothers’ illness, breastfeeding conditions and multiple
births. Overall, congenital illness was most often
identified as a vulnerability marker, while infants’ mental
health and mothers’ adolescent and anthropometry
status was least often identified as such.

A critical window currently exists to connect the
global LBW, integrated management of childhood
illness (IMCI), small and/or sick newborn (SSN), andwasting guidance development processes and therisk stratification initiative that is underway at WHO,and to apply a person-centred lens and approachto United Nations-led initiatives to support guidance
update at the national level. We are hopeful about
the potential the that could flow from such an
approach. We welcome opportunities to share further
details of what we found in our review (and how we
did it) and we are committed to working with andwithin all due processes at global and country levels
wherever this would be helpful. This is an urgent need.
We cannot unsee what we have seen. We feel a senseof responsibility. We commit to report back on what
happened next (or not).

We then identified 11 ‘dimensions of care’ for various‘conditions’ and assessed and reflected on theiressence and spread across guidance. This varied
widely in scope and depth.

iiInvisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Abbreviations
CCC

Clinical Care in Crises

ECD

Early childhood development

ENN

Emergency Nutrition Network

HC

Head circumference

IM(N)CI

Integrated Management of (Newborn) and Childhood Illness

LBW

Low birth weight

LSHTM

London School of Hygiene and Tropical Medicine

M&E

Monitoring and evaluation

MAMI

Management of small and nutritionally at risk infants and their mothers

MUAC

Mid-upper arm circumferenceOECD

Organisation for Economic Co-operation and Development

PAHO

Pan American Health Organization

PRISMA-ScR

Preferred Reporting Items for Systematic Reviews and Meta-Analysis
extension for Scoping Reviews

SGA

Small for gestational age

SSN

Small and/or sick newborn

u6m

Infant under 6 months of age

UNFPA

United Nations Population Fund

UNICEF

United Nations Children’s Fund

USAID

United States Agency of International Development Agency

WAZ

Weight-for-age z score

WHO

World Health Organization

WH(L)Z

Weight-for-height (length) z scoreiii

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Contents
Summaryii

Abbreviationsiii

Contents1

1

Why did we do it?

2

1.1

The burden

3

1.2

The complexities

3

1.3

A timely window of opportunity3

1.4

Contribution to a collective effort

4

1.5

Navigating the review

42

How did we do it?

5

2.1

6

Guiding framework, key terms and working definitions

2.2 Inclusion criteria

7

2.3 Search strategy

8

2.4 Guidance screening and selection

8

2.5 Data extraction and synthesis

9

2.6 Boundaries

93 What did we find?

10

3.1

Selected policy guidance

11

3.2 Characteristics of policy guidance

12

3.3 Descriptors of vulnerability

13

3.4 Policy guidance content on continuity of care

164	Emerging considerations: to what extent does current policy guidance support continuityof care for vulnerable infants and their mothers, and to what extent could it do so?
4.1

Unpredictability of policy guidance content

20
21

4.2 Hidden from view21

4.3 Missing health and nutrition of mothers

22

4.4 Newborn vulnerable babies – what happens next?

22

4.5 Continuity of care – present in principle, missing in practice23

4.6 Poor growth reflects more than poor nutrition

23

5 Looking ahead: to what extent could policy guidance support continuity of care?
5.1

24

Some considerations

25

5.2 Global-level suggestions

25

5.3 Implications for uptake of guidance at national level by health managers and practitioners

27

6 Conclusions: joining the dots, filling the gaps

28

References

30

Annexes32

1

1

Why did we do it?
This scoping review was undertaken to explore the extent to which global policy
guidance currently supports continuity of care of vulnerable infants under six months
and their mothers, and the extent to which it could do so.

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

1.1 The burden

These communities produce condition-specificguidelines and implementation resources thatare developed by specialists through diverse andoften disconnected approaches. Lack of overlap in
personnel, structures, implementation strategies ordissemination channels means nutrition practitioners
may be unaware of relevant health guidance andhealth practitioners may be unaware of nutrition
guidance. Even within specialities, worlds may notoverlap [2]. Since vulnerable infants are described indifferent ways, commonalities and relevance acrosscare disciplines may be masked. Care is complex
since it involves multiple disciplines and actors
across health, nutrition and social services.

Many infants are born vulnerable, or become so in
the first six months of their lives. These infants are more
susceptible to malnutrition and disease, and therefore
are at greater risk of poor growth and development,
long-term ill-health and increased mortality [2]. An
estimated 8.9 million babies (14.6%) are born with low
birth weight (LBW) each year [3], which carries shortand long-term risks, especially for premature babies
at lower gestational age [2]. In low- and middleincome countries, an estimated 9.2 million (15.5%)
infants under six months (u6m) are wasted, 10.3
million (17.4%) are underweight, and 11.8 million (19.9%)
are stunted [4]. Experiencing an episode of wasting,particularly in the first three months of life, increases
the risk of subsequent, and persistent, wasting, andconcurrent wasting and stunting as children age[5, 6]. This poor start to life contributes to the global
burden of 45 million children under five years of age
who are wasted and 149 million who are stunted[7], affecting health outcomes in current and future
generations and losing individual and community
potential [5, 8].

1.3 A timely window ofopportunity
Global guidelines make evidence-based
recommendations on which global and national
implementation guidance are based, and thisguidance itself then informs practice. There have been
several important global policy developments related
to vulnerable infants u6m and their mothers in recent
years, with more underway. For example, in 2013, theWorld Health Organization (WHO) addressed a criticalguideline gap by recommending outpatient carefor medically uncomplicated wasting in infants u6m[11, 12]. The recently published 2023 WHO guideline
on wasting and nutritional oedema in children[13] has broadened the scope to include not only
infants u6m with clinical signs of malnutrition but
also those at risk of poor growth and development.
It combines prevention and treatment and includes
maternal health and nutrition to centre care on themother–infant pair throughout the first six months oflife. Moreover, the guideline recommendations focus
on infants aged from one to six months, deferring
care in the first month to WHO recommendations onmaternal and newborn care [14], including pretermand LBW infant care [15].

1.2 The complexities
Vulnerable infants u6m may be described in many
ways, including as newborns with LBW, especiallythose born preterm or small for gestational age(SGA); infants identified with wasting or acutemalnutrition, stunting or underweight; nutritionallyat risk; with acute or chronic illness; with disability orother growth and development concerns; and whose
mothers have nutrition, physical or mental health orsocial challenges. We have used the term ‘vulnerable’
as it feels like the most accessible and holistic term,
but other terms may work too; please interpret
within the spirit of our intent, rather than limit yourunderstanding to ‘technical’ definitions.
Comprehensive and respectful, quality personcentred care for vulnerable infants u6m and theirmothers is needed [9]. Awareness, ambition andprogress towards securing this has improved overthe past 10 years but it remains challenging to deliverand limited in coverage [10]. Currently, care for
infants u6m is scattered across care processes, withvarious communities of practice focusing on different
vulnerable infant and mother subgroups, suchas infants with LBW or prematurity, sick newborns,
malnourished infants, and adolescent mothers.

are is complex since it involves“Cmultiple
disciplines and actors
across health, nutrition andsocial services.

”3

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

We are aware of several WHO and United Nations
Children’s Fund (UNICEF) initiatives within healthand nutrition that are now underway to support
the uptake of different guidelines in practice. These
include the development of global programme
guidance for nutritional management of infants at
risk of poor growth and development (UNICEF), thedevelopment of implementation guidance for the2023 wasting guidelines (WHO-UNICEF) and small
and/or sick newborn (SSN) guidelines (WHO), and a
WHO–UNICEF partnership to support uptake of the2023 wasting guideline at country level (UNICEF, WHOand others). We understand that an update of theintegrated management of childhood illness (IMCI)
guidelines is also planned by WHO. Finally, WHO isnearing completion on pooled cohort data analysis
it is leading to inform child mortality risk stratification,with the aim of informing global guidelines and theirderivatives [16].

In the review we explored the extent to which
global policy guidance supports continuity ofcare of vulnerable infants u6m and their mothers,
and the extent to which it could do. We did this byinvestigating four questions:

To maximise on the time-sensitive opportunities thatcurrently exist to secure policy guidance coherence,
we undertook a scoping review to investigate thenature and coherence of global policy guidance
relevant to the continuity of care of vulnerable
infants u6m and their mothers.

The report is organised as follows. Section 2 describes
the methods used in the scoping review. Section 3
first presents the process conducted to select the
global policy guidance included in the review.
It then addresses questions 2 and 3 about thecharacteristics of the selected policy guidance andthe descriptors of vulnerability and continuity of carereflected in them. Section 4 addresses the fourthquestion on considerations for developing policy
guidance related to vulnerable infants u6m and theirmothers. Section 5 looks at the extent to which policy
guidance could further support continuity of care in
the future. This is followed by an overall conclusion.

1	What are the characteristics of policy guidance
related to vulnerable infants u6m and theirmothers?
2	How is vulnerability in infants u6m and theirmothers described?
3	How is continuity of care for vulnerable infants u6mand their mothers conceptualised?
4	What are emerging considerations for developing
policy guidance that address vulnerable infants
u6m and their mothers?

1.5 Navigating the review

1.4 Contribution to a collective
effort
The MAMI Global Network, an international communityof health and nutrition practitioners, researchersand policy-makers, coordinated and co-chaired by
ENN, actively supports the collective developmentof evidenced policy and practice to improve thecare of vulnerable (small and nutritionally at risk)
infants u6m and their mothers. We, and many of our
network members, are involved in the developmentof guidelines and implementation guidance at global,
regional and national levels. This scoping review
reflects ENN’s commitment to this collective effort.

The Annexes present working definitions in
Annex 1, search terms used for finding policy
guidance in Annex 2, bibliography of all selected
key policy guidance on care for vulnerable infants
u6m and their mothers in Annex 3, and variables
used in the analyses in Annex 4. Supplementary
Table 1 is included in Annex 5. Full databases areavailable on request. An online repository ofcollated priority guidance is available here.

many of our network members, are involved in the development of guidelines“Wande, andimplementation guidance at global, regional and national levels. This scoping
review reflects ENN’s commitment to this collective effort.
”

4

2

How did we do it?
We explored different types of global policy guidance, from multiple sources, that
relate to the care of vulnerable infants u6m and their mothers, to identify key
concepts and research gaps to inform policies, practice and research in the future.

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

2.1 Guiding framework, key
terms and working definitions

We chose the scoping review method due to its
valuable qualities in developing maps of complex
subjects [17]. The ‘population, concept, and context’(PCC) mnemonic assisted in constructing clear
inclusion criteria [18]. We used the Preferred Reporting
Items for Systematic Reviews and Meta-Analysis
extension for Scoping Reviews (PRISMA-ScR) as a
guideline for reporting [18].

Guiding framework. The MAMI Care Pathway is an
integrated care pathway approach [21] presented asa package of resources for contextualisation, initiallydeveloped by global peers under the MAMI Global
Network to support implementation of the 2013 WHO
updated recommendations on the management of
infants u6m in outpatient care. It is consistent with thelatest recommendations of the 2023 WHO guideline on
the management of infants u6m at risk of poor growthand development (see blog, September 2023) [22].

We embraced the complexity of this field by adopting
an iterative, responsive approach in our exploration[19]. We used a ‘learning by doing’ approach,constantly refining our thinking processes to reflect
and adapt to the reality of our findings. We began byusing a published national scoping review protocol
to help conceptualise and initially frame this globallevel review [20]. We relied on our collective expertiseand reviewers to pragmatically consider what is
feasible and useful for practice-informed policy
interpretation, implementation and development.
Our pragmatic practitioner lens informed strategic
decisions about how to categorise, prioritise, mapand synthesise findings.

We used the MAMI Care Pathway as a guiding
framework to appraise how, for whom, and to what
extent policy guidance supports comprehensive andrespectful quality person-centred care for vulnerable
mother–infant pairs [23]. For example, we began byconsidering the dimensions of continuity of care thatare reflected in the MAMI Care Pathway approach for“small and nutritionally at risk” infants u6m and webuilt upon these throughout the process, based onwhat we learned and what was feasible to undertake.

‘We’ involved a team (co-authors) who haveexperience in developing global and national policy
guidelines and guidance relating to nutrition andhealth (HD, MMG) and in conducting scoping reviews(HD, MMG, SVW, EB, AS) and external reviewers withtechnical expertise and practical experience (LD, MM,
PW, AW, ND). We shared our rationale, objectives andapproach with WHO experts involved in developing
guidance on wasting and poor growth, breastfeeding
and SSN and we invited input and collaboration.

Key terms and working definitions. Key terms usedin this review are described in Box 1 and working
definitions are shared in Annex 1. Box 1 also gives thetypes of policy guidance classification used in thereview.
Reflexivity statement. Our intended users arethose developing global policy guidance and thoseseeking to use it for, e.g., developing implementation
guidance, or national guidance updates or uptake.
We include ourselves as users. We recognise that
our experiences, assumptions and perceptions haveinfluenced the results of this work, and we havedeclared this wherever possible [24]; this brings bothpotential bias and added value. Throughout, we haveconsidered the diverse needs and contexts of theintended users as the guiding principle of the review.

e embraced the complexity of this“Wfieldby adopting an iterative, responsive
approach in our exploration.
”

6

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Box 1: Key terms and policy guidance classification used in this scoping review

Key terms
Policy guidance includes normative (WHO) guidelines, implementation or programme guidance and briefs,
training guides, manuals, action plans, strategies and frameworks that relate to the care of vulnerable infants
u6m and their mothers. This includes but is not limited to those generated by the United Nations, professional
networks, non-governmental organisations and civil society.
Vulnerable mother–infant pairs includes (but is not limited to) infants from birth to six months of age (u6m),
including newborns born with LBW, premature and/or SGA; identified with wasting/acute malnutrition, stunting,underweight; and/or affected by acute or chronic illness and disability or other growth and development
concerns; and the infants of mothers who themselves are vulnerable due to their physical or mental health,nutritional or social condition/circumstance(s).
Care, for the purpose of this review, covers health and nutritional care for infants u6m, and physical andmental health, nutrition, and social care for their mothers, addressed in community or primary care settings.
Continuity of care is a term used to indicate one or more of the following attributes of care: (i) the provision ofservices that are coordinated across levels of care–primary care and referral facilities, across different settings andproviders; (ii) the provision of care throughout the life cycle; (iii) care that continues uninterrupted until the resolutionof an episode of disease or risk; (iv) the degree to which a series of discrete health care events is experienced bypeople as coherent and interconnected over time and is consistent with their health needs and preferences [1].
Person-centred care is an approach to care that consciously adopts individuals’, families’ and communities’
perspectives as participants in and beneficiaries of trusted health systems. This perspective can be characterisedby dimensions such as respect for patients’ values, preferences and expressed needs regarding the coordinationand integration of care, information, communication and education, physical comfort, emotional support
and the alleviation of fear and anxiety, the involvement of family and friends, transition and continuity.
https://www.scie.org.uk/providing-care/personalised-and-person-centred-care/
Guidelines, normative WHO guidelines: these describe the what (evidence, best practices); they include
evidence-based recommendations.
Guidance or manuals: these describe the how, to support implementation; they include guidance, manuals
guides, and materials for implementation.
Enabling documents include frameworks, action plans, strategy papers, and training materials that support,e.g., quality implementation, development of competencies, achieving set goals, improving quality, strengthening
political commitment, and creating opportunities to accelerate spread and sustainable scale-up.
Note that in this document, ‘mother’ is synonymous with mother or principal caregiver.

2.2 Inclusion criteria

Documents of interest included those covering feeding
support (support for breastfeeding/non-breastfeedingof infants u6m), clinical and public health interventions
for vulnerable infants u6m and/or mothers, active
growth monitoring, and food or supplementationinterventions, as well as guidance covering crosscutting aspects such as continuity of respectful quality
care across services and across the life-cycle.

Population. The selected documents targeted
vulnerable newborns, infants u6m, and mothers ofinfants u6m across the globe, focusing on thosein low- and middle-income countries. We wereinterested in infants u6m who were born or became
vulnerable, rather than the general population of
all infants. However, we were open to other relevant
criteria identified throughout this process.

Context. All settings and contexts applicable to thecare of vulnerable infants u6m and their mothers
were considered. This included, but was not limited to,
inpatient care (secondary and tertiary care settings),
outpatient care (primary care settings) and community
care, with outpatient and community care in low- andmiddle-income countries being of particular interest.

Concept. Selected documents covered global
policy guidance on infant health and nutrition, childdevelopment, maternal physical and mental health,maternal nutrition and feeding.

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

2.4 Guidance screening andselection

Documents that only focused on children older thansix months of age and regional and national policy
guidelines were excluded. However, the descriptionof “policy guidance” (Box 1) that guided the decisionon the documents’ relevance for inclusion was
further extended by applying a pragmatic practicelens. For example, we considered the nature anddepth of practical content that was included in adocument to determine whether to include it in our
appraisal, rather than how the guidance was officiallycategorised. This explains why in some cases relevant
documents, such as regional policy guidance, wasincluded that would otherwise have fallen outside
the stated inclusion criteria (see 2.1).

We screened and selected global policy guidance on
care of infants u6m and their mothers, published in
English, with no set time limit, in five steps.
Step 1 Identification. Citations of all documents
identified by the grey literature search and shared by
key contacts were compiled in a spreadsheet (Excel)
and duplicates were removed.
Step 2 Screening. Screening of titles and summaries
was conducted by one researcher (AS) to identify
and remove policy guidance that was outside thescope of the review. A second researcher (SVW)
reviewed the initial inclusion/exclusion of documents.
The reviewer team discussed inconsistencies andexceptions to reach a consensus.

2.3 Search strategy
We first searched for all global health, nutrition,
child development, food, and other relevant policy
guidance in the English language incorporating
any care dimensions specific to or applicable tovulnerable infants u6m and their mothers. No date
restriction was applied as the latest developed policy
guidance supersedes older versions.

Step 3 Eligibility. The full text was screened by two
researchers (HD, SVW). Where discrepancies arose,
these were discussed with one or more senior coauthors. Policy guidance that had been replaced
by a more recent version was removed. The list ofpolicy guidance was shared with experts to seek
their opinion on the selection and to verify whether
any important documents had been overlooked.
Any missed policy guidance was added.

Publicly available policy guidance was identified
from the websites of relevant institutions and Google
Scholar. Search terms related to each of the concepts
of interest were applied, with additional search terms
iteratively tested and included to capture policy
guidance that did not specify the concepts of interest(Annex 2). Reference lists of included documents were
hand-searched to identify further eligible documents.

Step 4 Inclusion. Retained policy guidance
was classified into three groups: a) guidelines(normative WHO guidelines) describing evidence
and recommendations, b) guidance and manuals
explaining the how-to for implementation, and c)enabling documents that supported care continuity;e.g., documents relating to competencies, quality,
scale-up, and strategies (see Box 1).

Further sourcing of documents occurred throughseeking expert advice, via email through key contacts
and via a snowballing effect. Key contacts included
members of the MAMI Global Network and othernetworks coordinated by the ENN, stakeholders fromrelevant institutions and the coordinators of relevant
mailing lists, networks, or groups (e.g., newborn,
reproductive, or quality of care initiatives). Key
informants were also invited to provide information(via email or through a key informant interview) on
related plans (e.g., for developing implementation
guidance for recent/planned guideline updates) and/or
any updates to policy guidance underway or planned.

Step 5 Prioritisation. Policy guidance that directly
addressed some aspect of vulnerability in infants
u6m or their mothers was organised as a first priority.
Policy guidance that primarily addressed healthy
newborns or babies or promotive infant or maternal
health in general was organised as a non-priority.
A list of all policy guidance captured in this review
is available in the bibliography provided in Annex 3.
Enabling documents were not carried beyond this stepas they were deemed beyond our scope (see 2.6).

8

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

2.5 Data extraction andsynthesis

Phase 4 Interrogating and synthesising data for
emerging considerations. The team examined theextracted data and appraisals of priority documents
to identify key considerations for the development
and implementation of policy guidance. Team
meetings were held on 28–29 November and 13
December 2023. This phase continued until its
conclusion in early January 2024.

Three phases of data extraction and one synthesis
phase were conducted to organise informationaccording to key themes, which are summarised
below and detailed in Annex 4. We followed an
iterative process of adjusting frameworks based onrefinement in our thinking as we learned throughout
the process. The data were extracted and appraisedby three reviewers (EB, HD, SVW).

2.6 Boundaries
This scoping review did not include evidence frompublished research trials (e.g., intervention studies),
our focus was on the content of evidence-informed
policy guidance rather than the appraisal of theevidence base itself. We did not assess the risk ofbias or the quality of the documents, as this is not
required in scoping reviews. Policy guidance that werefer to as “enabling documents” were not appraised
in detail because, while relevant as broader policy
context, they did not have the necessary depth andscope of content for our practice-centric appraisalof guidance on care. However, we catalogued all
resources identified during this review for possible
future appraisal (information available on request).

Phase 1 Appraising key characteristics. We included
publication year, URL, source, title, type, aim, topic,
target audience, target population, infant description,mother description, sector, level of care, care service,
age timeline, infant risks covered, maternal risks
covered, interventions, and reviewer notes.
Phase 2 Describing vulnerability of infants u6mand their mothers. A pre-identified list (baseline)of ‘vulnerability factors’ associated with increased
risk of mortality, morbidity, and poor growth anddevelopment, based on the MAMI Care Pathway,
was expanded throughout the review. The dataset
was categorised into poor birth outcome; low infant
anthropometry (including nutritional oedema);poor growth based on sequential measures ofponderal growth; and risk factors for poor growthand development (infant and maternal factors).

This scoping review did not require ethical approval,
given that the data included was publicly available.

Phase 3 Appraising guidance on continuity ofcare. The list of variables for describing continuityof care built upon the MAMI Care Pathway (see 2.1)
and the WHO continuity of care definition (Box 1), andwas expanded to include variables on supporting
the organisation of care. This led to the following
variables which were used to examine continuity ofrespectful quality care for the respective conditions:care across time, services and levels of care;
integrated care pathway; comprehensive personcentred care; early childhood development (ECD);
mother (principal caregiver), father and family
support; community participation; embeddedness(mainstreaming in routine care); local health system
support; monitoring and evaluation (M&E); wider
multisectoral support; and organisational capacities,
including resilience.

followed an iterative process“Wofeadjusting
frameworks based onrefinement in our thinking as welearned throughout the process.

”

9

3

What did we find?
This section first describes how the policy guidance was selected and organised.
Next, the three phases of appraisals, on characteristics, vulnerability descriptors, andguidance on continuity of care, are examined.

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

3.1 Selected policy guidance
A broad range of relevant policy guidance was identified and examined in regard to whether it was fit for
purpose, through five steps (Figure 1). In total, we identified 83 global policy guidance documents to include
in our review, of which 51 documents were identified as “priority”; i.e., directly addressing vulnerable infants u6mand their mothers. These comprised (a) 13 guidelines, (b) 21 guidance and manuals (six were manuals), and(c) 17 enabling documents.
All 34 priority guidelines and priority guidance and manuals are available to review or download here.

Figure 1: Flow chart depicting the selection of global policy guidance for vulnerable infants u6mand their mothers

Policy guidance identified
n = 91

Step 1
Identification

Duplicates or not eligiblen = 15
Policy guidance screened
n = 76

Step 2
Screening

Overruled or not eligiblen = 10
Policy guidance assessed
for eligibilityn = 66Retrieved by snowballingn = 17

Step 3
Eligibility
Policy guidance retained
n = 83

Step 4
Inclusion

Step 5
Prioritisation

Guidelinesn = 20

Guidance andmanualsn = 42

Enabling
documentsn = 21

Priority
guidelines
n = 13

Priority guidance
and manuals
n = 21

Priority enabling
documents
n = 17

Policy guidance with data on characteristics

Priority policy guidance with data on vulnerability
and guidance on care

Policy guidance by type

Policy guidance not retained for further analysis

11

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

We examined policy guidance in sequence, as follows.

Guidance and manuals similarly targeted single
conditions (e.g., cerebral palsy, severe illness, LBW,
perinatal mental health, preterm birth, tuberculosis,
wasting) or sets of conditions (e.g., commonchildhood conditions, structural birth impairments)
and profiles of vulnerability or risk (e.g., small andnutritionally at risk infants and their mothers; small,sick and preterm infants; infants at high risk ofmortality), as well as quality of care and factors or
behaviours that influence vulnerability (e.g., feeding
difficulties).

In Phase 1, key characteristics of all retained global
policy guidance documents (20 guidelines, 42 guidance
documents and manuals, and 21 enabling documents)
were appraised. Two researchers completed theappraisal, and the findings were assessed in reviewer
meetings. From Phase 2 onwards, we exploredthe nature of vulnerability in 62 policy guidance
documents (20 guidelines and 42 guidance andmanuals) and examined their coverage in more depth.
We excluded the 21 enabling documents from further
appraisal (see 2.6). Three researchers completed
the appraisal, and the findings were assessed inteam meetings. In Phase 3, 34 policy guidancewere prioritised and appraised on continuity ofcare (13 guidelines and 21 guidance documents
and manuals). Three researchers completed theappraisal, and the findings were discussed in teammeetings. In each phase, any differences of opinion
were discussed and resolved as a team.

Target audience. Across guidelines, the intended
target audiences included policy-makers (i.e.,
those involved in the development of policies andprocedures at national and subnational levels),
programme managers and healthcare providers.
Guidance and manuals were more positioned
towards healthcare providers, but some did include
policy-makers and programme managers as part oftheir specified audience (15 out of 42).
Target population. Among the guidelines, all but
one explicitly targeted the infant (20 out of 21), withfewer than half of these (7 out of 20) incorporating
aspects related to the mother. One guideline targeted
the mother alone (1 out of 21). Of the 42 guidance
documents and manuals, half targeted the infant
only, and one targeted the mother only (perinatal
mental health), with 11 targeting both the infant andtheir mother. The remaining nine were related toother aspects of service provision (e.g., integration ofservices, M&E, resources and equipment, and qualityof care) rather than on care for specified conditionsin infants and/or their mothers. All guidance included
aspects of care relevant to infants u6m and/or theirmothers, with most guidelines (20 out of 21) andguidance and manuals (30 out of 42) including aspectsof care during the early postnatal period, either inisolation or as part of a broader infant age group.

3.2 Characteristics of policy
guidance
The characteristics of all 83 policy guidance
documents were gathered together and the list ofvariables is shared in Annex 4. Here we report on key
characteristics of 62 policy guidance documents (20guidelines and 42 guidance documents and manuals).
Source and publication date. All guidelines were
published by WHO, with one being a clinical practiceguideline developed for the Latin America andthe Caribbean region in partnership with the Pan
American Health Organization (PAHO). Guidance
and manuals were published by a wider range oforganisations, including WHO and UNICEF (30 out of42), as well as other implementing organisations,research partners and networks.
Publication date. These ranged from 2011 to 2023
for guidelines and from 2003 to 2022 for guidance
and manuals, although only four documents were
published prior to 2011. Some guidelines replaced
earlier versions, either fully or to some degree(e.g., selected recommendations were updated
while others were retained in their original form).

Infant descriptors of vulnerability. Many descriptors
were used for the infant’s level of vulnerability;e.g., healthy newborn, healthy infant, vulnerable
newborn, born preterm, LBW, small, small sick, (non)breastfed, developed wasting or acute malnutrition,
underweight, stunting, growth faltering, at risk of poor
growth and development, feeding problem, excessive
crying, physical disability or developmental delay,with acute or chronic illness.

Topic. Some guidelines targeted a single condition(e.g., HIV, LBW, preterm birth, possible serious
bacterial infection, tuberculosis, zika virus), or a setof conditions (e.g., common childhood conditions,critical illnesses), while others covered profiles of riskthat reflect vulnerability (e.g., at risk neonates, infants
at risk of poor growth and development) and aspectsof care either in the facility (e.g., resuscitation) or athome (e.g., breastfeeding, support for ECD).

12

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

3.3 Descriptors of vulnerability

Maternal descriptors of vulnerability. We planned
to appraise maternal coverage by examining
characteristics such as healthy, sick, mental healthissue, malnourished, adolescent, prenatal, perinatal,
postnatal issues, (not)lactating, absent, multipara,primipara, absent, dead. In practice, we found thatmost policy guidance addressing maternal vulnerability
directly related to the perinatal period (pre-existingor newly developed physical and mental health andnutrition conditions and socioeconomic challenges).

Categories of vulnerability. Examining thecharacteristics of the 62 policy guidance documents,
we identified and categorised 46 factors that
described the vulnerability of infants u6m and theirmothers. We organised these into:• small (8) or sick (6) newborns;•	low anthropometry (6) and poor ponderal growth(6) of the infant;Sector (speciality, discipline). The documents
were explored for content on, e.g., child health, childnutrition, child development, maternal physicalhealth, maternal mental health, maternal nutrition,
reproductive health, and neonatal health. We foundthat most policy guidance was generated by theneonatal health sector.

• vulnerability factors of the infant (8); and• vulnerability factors of the mother (12).
With regard to anthropometry and growth, there wasvariation in both the vulnerability factor and how
it was determined; e.g., while five policy guidance
documents included WAZ, three used a cut-off ofbelow (<) -2 z score and two used <-3 z score.

Level of care. Content was explored on, e.g., tertiary,
secondary, primary or community care. About onethird of the guidelines covered all levels of care (7 outof 21) and only one covered community care alone.
More than half (24 out of 42) of guidance documents
and manuals covered care at primary and secondary
levels, with or without tertiary-level care included,
eight covered community alone, and six covered only
health systems aspects.

Four vulnerability factors (i.e., the use of the 110 mm
MUAC cut-off in infants aged zero to five weeks and
115 mm in infants aged six weeks to five months,
insufficient weight gain identified by <-2 standard
deviation (SD) of the WHO growth velocity standards,
and female-headed households) were not covered inany of the documents.
Next, we collapsed the vulnerability factors from46 to 28 by merging those we considered very similarin nature (i.e., merging the following factors into
one combined factor each: four LBW factors, threepreterm factors, seven low anthropometry factors,
seven poor ponderal growth factors and three infant
illness factors). Then we tracked the number andpercentage of vulnerability factors mentioned in the
34 priority policy guidance documents to appraise
the coverage of the 28 vulnerability factors.

Care service. We found that content mostly consideredcare at antenatal, maternity, child health, and childnutrition were covered. Two guidance documents dealt
with programme management in general.
Infant vulnerability. We used ‘descriptors’ outlined
above to explore content on, e.g., preterm, LBW, SGA,
poor ponderal growth (recent weight loss, poor growth,
low weight-for-age z score (WAZ), low mid-upper arm
circumference (MUAC)), feeding problem, metabolic
problem, excessive crying, disability, acute or chronic
illness. We share detailed findings below (see 3.3).

Findings are detailed by individual guidance inAnnex 5 (supplementary Table 1: vulnerability factors
across 34 priority policy guidance documents oncare of vulnerable infants u6m and their mothers),
and are summarised by guidance type in Table 1.

Maternal vulnerability. We built on ‘descriptors’
outlined above to explore content on, e.g., nutritionalrisk, impaired breastfeeding conditions, physicalhealth, maternal mental health, multipara, primipara,adolescent, absent, dead. We share detailed findings
below (see 3.4).

e identified and categorised 46“Wfactorsthat described the vulnerabilityof infants u6m and their mothers.
”

Interventions. We explored content on, e.g., active
case finding or screening, health assessment or
IMCI, breastfeeding assessment, non-breastfeeding
assessment, breastfeeding support, nonbreastfeeding support, clinical care, nurturing care,
ECD, crying and sleep counselling, mental healthcounselling, social support, follow-up visits, home
visits, family involvement, and continuity of care.
Detailed findings are shared below (see 3.4).

13

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Table 1: Vulnerability factors mapped across priority policy guidance documents by type(*ordered by frequency in priority guidelines)
Priority guidelines*
Vulnerability factors (n=28):

Priority guidance andmanuals

Priority policy
guidance(N=13)%(N=21)%(N=34)%

Congenital illness

7

54

15

71

22

65

Low birth weight

7

54

14

67

21

62

Preterm

7

54

13

62

20

59

Disability or congenital abnormality

5

38

12

57

17

50

Birth trauma or complications

5

38

7

33

12

35

Preterm morbidity

4

31

11

52

15

44

Small for gestational age

3

23

5

24

8

24

Poor ponderal growth (weight loss,
stagnant or insufficient weight gain)

3

23

12

57

15

44

Low anthropometry (low WAZ, low WLZ
or low MUAC)

3

23

6

29

9

26

Nutritional oedema

3

23

6

29

9

26

Breastfeeding difficulties

7

54

14

67

21

62

Illness

7

54

11

52

18

53

Not breastfed

4

31

13

62

17

50

Neurodevelopment concerns

4

31

11

52

15

44

Hospitalisation history

1

8

5

24

6

18

Mental health

0

0

3

14

3

9

Physical health

6

46

15

71

21

62

Breastfeeding conditions

5

38

12

57

18

53

Mental health

5

38

11

52

17

50

Social or contextual factors affecting
care and feeding practices

3

23

11

52

15

44

Birth complication

3

23

6

29

6

18

Adolescent

2

15

7

33

3

9

Absent or died

2

15

5

24

21

62

Multipara

1

8

6

29

18

53

Primipara

1

8

2

10

17

50

Anaemia

0

0

3

14

15

44

Birth spacing

0

0

2

10

6

18

Low MUAC

0

0

2

10

3

9

Small and/or sick newborn

Nutritional status infant

Risk factors related to the infant

Risk factors related to the mother*ordered by frequency

14

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

After we identified the leading vulnerability factors in the priority documents, we split them at the median (equal
or above (≥) the 50% threshold), as an arbitrary navigational marker to get a sense of which vulnerability factors
were included the most and where (Box 2). We observed as follows:•	Factors that were more frequently mentioned in priority guidelines (more than (>) 50%) were those associatedwith the small and/or sick newborn (congenital illness, LBW, preterm), and breastfeeding difficulties and illnessof the infant.
•	Factors that were less frequently mentioned (40–50%) were related to the physical health of the mother.
•	Factors that were more frequently mentioned in priority guidance and manuals (>50%) were those associatedwith the small and/or sick newborn (congenital illness, LBW, preterm, disability and congenital abnormalities
and preterm morbidity); poor ponderal growth, breastfeeding difficulties, no breastfeeding, and illness of the infant;and physical health, breastfeeding conditions, mental health and social or contextual factors of the mother.

Box 2: Vulnerability factors present in at least half (more than 50%) of the 34 priority policy
guidance documents on care of vulnerable infants u6m and their mothers

Small and/or sick newborn

Priority guidelines

Priority guidance and manuals•	Congenital illness•	Congenital illness•	Low birth weight•	Low birth weight•	Preterm•	Preterm•	Disability and/or congenitalabnormality•	Preterm morbidity

Nutritional status infant•	None•	Poor ponderal growth

Risk factors related to the infant•	Breastfeeding difficulties•	Breastfeeding difficulties•	Illness•	Not breastfed•	Illness•	Neurodevelopment concerns

Risk factors related to the mother•	None•	Physical health•	Breastfeeding conditions•	Mental health•	Social or contextual factors

Breastfeeding difficulties (related to the infant) or
breastfeeding conditions (related to the mother)were most commonly included for the identificationof infant vulnerability. Not being breastfed was more
frequently included in priority guidance than in priority
guidelines and manuals.

Overall, we noted there was a low frequency ofpriority guidance with content specific to SGA, lowanthropometry and nutritional oedema. Only threepriority guidelines (3 out of 13) and half of the priority
guidance and manuals (12 out of 21) included one
or more anthropometry indicators as a vulnerability
factor. The mother’s MUAC was mentioned in nopriority guidelines and only in three priority guidance
documents and manuals (3 out of 21), while no othermaternal nutrition marker was ever mentioned.

Maternal vulnerability (i.e., breastfeeding conditions,mental and physical health and social or contextual
factors affecting care and feeding practices) was
more frequently mentioned in guidance and manuals
than in guidelines. Other maternal factors (i.e., birthcomplications, adolescent mother, birth spacing,
low anthropometry) were rarely mentioned.

15

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

3.4 Policy guidance content
on continuity of care

Next, we tried to understand and simply describe the“condition” (i.e., health problem, disease, disorder,
injury, disability, circumstance) the policy guidancecovered. The following conditions were coveredby priority guidelines: four covered newborn care,six covered illness, one covered poor growth, one
covered breastfeeding and one covered ECD.
The following conditions were covered by priority
guidance and manuals: five covered newborn care,seven covered illness, two covered preterm and LBW,
two covered poor growth and wasting, one covered
breastfeeding, two covered feeding difficulties, one
covered perinatal mental health, and one covered
reproductive health.

As a start, the team discussed and decided on 11
care dimensions by considering the care dimensionof quality person-centred continuity of care(as reflected in the MAMI Care Pathway guiding
framework), our collective experience, and the natureof the content we were identifying. Care dimensions
that were retained were the following: care acrosstime, services and levels of care; integrated carepathway; comprehensive person-centred care;early childhood development; mother, father, family
support; community participation; embeddedness(mainstream); local health system support;
M&E; wider multisectoral support; organisational
capacities. We considered a life cycle lens as anadditional dimension to explore but there was
too much complexity in degree, variation andinterconnectedness to do so without misrepresenting
or oversimplifying. When guidance fully or partiallyaddressed a dimension, we classified it as “applied”.

Finally, we explored which dimensions of care werecovered by the policy guidance. Table 2 shows foreach of the 34 priority policy guidance documentsfor vulnerable infants u6m and their mothers(13 guidelines and 21 guidance documents andmanuals) the nature of the condition and talliesof the dimensions of care covered.

M&E

●

●

–

●

–

–

●

–

●

●

●

–

●

●

●

●

●

–

–

–

●

–

–

●

●

●

●

●

●

●

●

●

●

●

●

–

–

–

●

–

–

–

–

–

–

●

–

●

–

–

–

–

●

●

●

–

●

●

●

●

●

●

●

Organisational capacities

Local health system
support●Wider multisectoral
supportMother, father, family
support●

Embeddedness(mainstream)

Early childhood
development●

Community participation

Comprehensive personcentred care

Condition

Integrated care pathway

Title of document

Care across time, services
and levels of care

Table 2: Dimensions of care across 34 priority policy guidance on care of vulnerable infants
u6m and their mothers

Guidelines
2023 WHO Guideline on theprevention and management of
wasting and nutritional oedema ininfants and children under 5 years

Poor
growth anddevelopment

2022 WHO Consolidated guidelines
on tuberculosis in children andadolescents

Tuberculosis

2022 WHO Recommendations forcare of the preterm or low-birthweight infant

Preterm, Lowbirth weight2021 WHO-PAHO Evidence-based
clinical practice guidelines for thefollow-up of at risk neonates

Newborn care2021 WHO Guideline: Infant feeding inareas of Zika virus transmission

Zika virus

2021 WHO Consolidated guidelines
on HIV prevention, testing, treatment,
service delivery and monitoring

HIV

16

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Care across time, services
and levels of care

Integrated care pathway

Comprehensive personcentred care

Early childhood
development

Mother, father, family
supportCommunity participation

Embeddedness(mainstream)

Local health system
support

M&E

Wider multisectoral
supportOrganisational capacities

Table 2: Dimensions of care across 34 priority policy guidance on care of vulnerable infants u6mand their mothers (continued)

●

n/a

n/a

●

●

–

–

●

●

–

–

●

●

●

–

●

–

●

●

●

–

●

–

–

–

–

–

–

–

●

●

–

–

–

–

–

–

●

–

●

●

●

–

–

●

–

–

–

–

–

●

●

●

–

–

–

–

–

–

–

–

●

●

–

–

–

Newborn
resuscitation

–

–

–

–

–

–

●

–

●

–

–

2022 WHO Guide for integration ofperinatal mental health in maternaland child health services

Perinatal
mental health

●

●

●

●

●

●

●

●

●

●

●

2022 UNICEF, University of Pretoria
Feeding preterm and low-birthweight
newborns

Preterm, Lowbirth weight

●

●

●

●

●

●

●

–

–

–

–

2022 WHO-Europe Pocketbook ofprimary health care for children andadolescents

Ill child

–

●

●

●

●

●

●

●

–

●

●

2022 SPOON Identifying feeding
difficulties in infants – guidelines forhealthcare professionals

Feedingdifficulties

●

–

–

–

–

–

●

–

–

–

–

2022 SPOON Screening children for
feeding difficulties – guidelines forhealthcare professionals

Feedingdifficulties

●

–

●

●

●

●

●

●

–

–

–

2022 UNICEF Integrating early
detection and treatment of childwasting into routine primary healthcare services

Wasting
●

n/a

n/a

–

–

●

●

●

●

●

●

2022 WHO Operational handbook on
tuberculosis. Module 5: Managementof tuberculosis in children andadolescents

Tuberculosis
n/a

●

●

–

●

●

●

●

●

●

–

Title of document

Condition

Guidelines
2020 WHO Improving early childhood
development

Early childhood
development

2018 WHO Guideline: Counselling of
women to improve breastfeedingpractices

Breastfeeding

2016 WHO Paediatric emergency
triage, assessment and treatment(ETAT)

Critically ill child2015 WHO Recommendations on
interventions to improve preterm birthoutcomes

Preterm2015 WHO Guideline: Managing
possible serious bacterial infection
in young infants when referral is not
feasibleIll child2012 WHO Recommendations for
management of common childhood
conditions

Ill child2012 WHO Guidelines on basic
newborn resuscitation
Guidance documents

17

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Care across time, services
and levels of care

Integrated care pathway

Comprehensive personcentred care

Early childhood
development

Mother, father, family
supportCommunity participation

Embeddedness(mainstream)

Local health system
support

M&E

Wider multisectoral
supportOrganisational capacities

Table 2: Dimensions of care across 34 priority policy guidance on care of vulnerable infants u6mand their mothers (continued)

●

●

●

●

●

●

●

●

●

●

●

–

●

●

●

●

●

●

●

●

●

–

●

●

●

●

●

–

●

–

–

●

–

●

●

●

–

●

–

●

–

●

–

–

Reproductive
health

●

●

●

–

●

●

●

●

●

●

●

2016 WHO Oxygen therapy for children

Ill child

n/a

●

–

–

●

–

●

●

●

–

–

2015 WHO, UNICEF, USAID Caring
for newborns and children in thecommunity: planning handbook forprogramme managers and planners

Newborn care
n/a

●

●

●

●

●

●

●

●

–

–

2014 WHO-Europe Hospital care formothers and newborn babies: quality
assessment and improvement tool

Newborn care

●

●

●

–

●

●

●

●

●

–

●

2014 WHO Integrated management ofchildhood illness – Chart booklet

Ill child

n/a

●

●

–

●

–

●

–

–

–

–

2014 Christian Blind Mission (CBM)
Recognising impairments at birth

Newborn care

n/a

●

●

●

–

–

●

●

–

–

–

2013 WHO Pocketbook of hospital carefor children

Ill child

n/a

●

●

●

●

●

●

–

●

–

–

2012 CBM Cerebral Palsy

Cerebral palsy

n/a

●

●

●

●

●

●

●

–

–

–

2003 WHO Kangaroo mother care: apractical guide

Newborn care

n/a

●

●

●

●

●

●

●

●

●

–

2003 WHO Managing newborn
problems

Newborn care

n/a

●

–

●

●

●

–

●

–

–

Title of document

Condition

Guidance documents
Manuals
2021 ENN, LSHTM, MAMI Care Pathway
Package, Version 3 (guiding
framework)

Small andnutritionally atrisk infant andmother2020 WHO, UNICEF The Baby Friendly
Hospital Initiative for small, sick andpreterm newborns

Breastfeeding2020 Partners in Health, UNICEF Early
Childhood Development Support for
High-Risk Infants

Preterm, Lowbirth weight2019 WHO Integrated Managementof Childhood Illness of the sick young
infant age up to 2 months. Chart
bookletIll child2018 IASC Field Manual on
Reproductive Health in Humanitarian
Settings● = vulnerability factor covered; – = vulnerability factor not covered; n/a = not applicable.

18

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Table 3 uses the information from Table 2 to show how the 11 care dimensions were represented across the
34 priority policy guidance on care of vulnerable infants u6m and their mothers. Through a deeper exploration,
we then interpreted the spread of the respective care dimension (see observation on coverage of care).

Table 3: Dimensions of care across 34 priority policy guidance on care of vulnerable infants andtheir mothers by policy guidance type
Dimensions of care

Priority
guidelines(n=13)

Priority guidance
and manuals(n=21)

Scoping team observations

Care across time,
services and levelsof care7

10

Gaps in continuity across time, primarily for follow-up after
discharge from a particular service or when infants ‘age out’ of
the service without adequate referral mechanisms. Also, gaps
in continuity between services and levels of care; e.g., linking
facility-based and community-based care.

Integrated carepathway618Strong focus on addressing one or more conditions, without
integration into a broader care pathway that assesses andresponds to maternal and infant risks and monitors progress/
links to follow-up care, particularly at other levels of the healthsystem (primary care/outpatient/community levels).

Comprehensive
person-centred care

517

Guidelines centred on the condition rather than the person(mother, infant), and there was a lack of comprehensive
assessment and care for both mother and infant together.

Early childhood
development

3

12

Limited contextualisation within a framework that supports
ECD, with a focus on identification and management of one ormore conditions, rather than on a holistic approach to ensuring
optimal growth and development.

Mother, father, family
support9

18

Primary focus on supporting the mother in feeding and carepractices for the infant, including targeted counselling formothers and other caregivers/family members in some cases.
Lack of inclusion of broader aspects of support, particularly forthe mother’s own health and social circumstances.

Community
participation

3

15

Limited aspects of community participation in care/organisation of care, particularly for guidelines.

Integration,embeddedness(mainstream)

1021

Focus on mainstreaming of guidance into routine care but lacking
detail on how to embed services across levels of the healthsystem (particularly primary care/outpatient/community).

Local health system
support9

14

Emphasis on integration into existing health systems andservices, particularly for guidelines. More limited reference tothe how, including steps such as situational analysis, needs
assessment and planning/ budgeting for the necessary
infrastructure, resources and capacity development.

M&E

10

13

A need for M&E frameworks often mentioned but lacking detail.

Wider multisectoral
support3

9

Minimally mentioned, with only one guideline emphasising
the need for linkages to other services and systems (social
assistance/protection, food, water and sanitation) and two
making brief mentions of policies/services outside of the healthsystem. Greater presence in guidance and manuals but still low
overall and a lack of detail when included.

Organisational
capacities

36

Largely missing, except for a few examples which included bestpractice statements for, or needs to align with, emergency
preparedness plans or humanitarian response strategies.

19

4Emerging considerations: to what extent does
current policy guidance support continuity ofcare for vulnerable infants and their mothers,
and to what extent could it do so?
To answer the question to what extent current policy guidance supports continuity ofrespectful quality care of vulnerable infants and their mothers, and to what extent it
could do so, we appraised the content (what content was covered, or not covered),
how it was presented (how accessible it was), and how comprehensive it was (theextent of connection or fragmentation).

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

4.1 Unpredictability of policy
guidance content

We also found considerable variability within thesepolicy guidance types. For example, sometimes
we did not find guidance content when we were
expecting it within guidance, or we stumbled acrossguidance content when we were not expecting it
in a guideline.

To help interpret what we found, it is important tofirst understand the complex nature of the policy
guidance we discovered (nature and process), which
we then further unpacked by applying a continuity ofcare lens.

We also found considerable variation incharacteristics across guidelines; e.g. in the natureand depth of the guideline contents. For example,
the nature of the content of the 2023 WHO wasting
guideline is considerably different compared to
the 2013 WHO wasting guideline update: the 2023
guideline has more implementation detail elaborated
under “good practice statements” and “notes” forimplementation and includes links to complementary
guidelines. The guideline development process
follows the 2014 WHO handbook for guideline
development [26], which has greatly helped toharmonise the guideline development process, but,even then, experts involved may influence how theevidenced contents are covered.

Overall, policy guidance on the care of vulnerable
infants u6m and their mothers was characteristically
patchy, inconsistent, and varied in nature, depth andscope of content, making it very difficult to compare,contrast and identify the degree of alignment
between them. This proved a constant challenge,
which we accommodated to the best that we could
through the scoping review process by mindfully‘muddling through’ the policy guidance ‘swamp’.
We distinguished between guidelines, and guidance
and manuals at the outset. WHO is the normative
entity of the United Nations that is responsible fordeveloping and disseminating evidence-based
guidance on health issues [25]. In practice, it appears
that WHO distinguishes between guidelines andguidance, where guidelines constitute evidenced
recommendations to achieve the best possible
health outcomes (evidencing what to do), andguidance constitutes a form of ‘information product’to support implementation (describing how to dosomething) [26]. Manuals commonly provide detailed
explanations on implementing interventions or using
technologies, describing what to do and how atindividual or service level, and on how somethingworks, such as explaining the physiopathology.

We also found considerable variation in timelines
for updates, and whether new policy guidance
replaced earlier versions in full or in part. For example,‘updated’ guidelines may only partly update specificrecommendations of a previous version. Moreover,
we found that review dates or schedules for updates
were often not stated [26]. The ‘living guidelines’
approach being adopted by WHO will keep abreastof latest evidence but adds another degree ofcomplexity that will need to be considered andmanaged to maximise on its potential (see 5.2).

4.2 Hidden from view

In practice, we found that the terms guidelines,
and guidance and manuals, are used, understood,
and interpreted in different ways by those writing
and using them, and that the lines between themare often blurred. For example, WHO guidelines arein fact WHO evidence-based recommendations
that seek to address an identified unmet needor uncertainty, and do not necessarily intend tocover care comprehensively for a condition or a
population. What is often presented as guidance ora manual most commonly provides implementation
guidance. National guidelines are often normative
treatment protocols, adding detailed implementation
descriptions to contextualise and standardise careand facilitate adherence at service level.

As anticipated, vulnerable infants u6m and theirmothers were described in many ways in the
documents reviewed, which may contribute to them
being less visible to different users, who might notrecognise the vulnerable baby or mother they arelooking for. Guidance for diversely described infantgroups and (sometimes) their mothers was scatteredacross multiple documents, making holistic careeven harder to visualise (and consequently realise).
Thus, health and nutrition actors must engage inwhat seems an ‘invisible pursuit’ across multiple
policy guidance to find, interrogate and apply
recommendations for care of vulnerable infants
u6m and their mothers.

21

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

4.3 Missing health and nutritionof mothers

4.4 Newborn vulnerable babies –what happens next?

Buried guidance masks what is in there, but also
hides what is not. In general, mothers’ vulnerability
was sparsely covered across policy guidance on
care of infant conditions. Maternal mental health wascovered in more than half the guidelines (what to do)
but was not well covered in guidance and manuals(how to do). This may reflect uncertainty in how tomanage a complex, sensitive aspect of care thatmany primary care practitioners are not trained to
identify and address, or do not feel confident doing
so. For example, through the MAMI Global Network,
practitioners have identified gaps in guidance on how
to manage maternal mental health in the context
of vulnerable infants; in our experience, this lackof certainty on guidance hampers good practice.
Maternal nutritional status was very poorly covered in
the documents reviewed: only one priority guidance
document included an anthropometric indicator andonly a few included anaemia, adolescent mothers andabsent mothers as prompts for support. In essence,
it feels like mothers are treated like breastfeeding‘equipment’, with targeted support centred on
manging breastfeeding difficulties and problems.

We found that priority policy guidance was weighted
towards the early postnatal period or very young
infants, addressing the small newborn, breastfeeding
difficulties, and the small sick young infant. Some that
intended to target infants more broadly (by virtueof stated scope) still homed in on this early period
by way of content. Given the heightened risk andparticularities of care in the early postnatal period,
this focus is understandable. However, it seems that
this is at the cost of explicit guidance on what should
happen next for these young vulnerable infants,
which we found was missing or lacked depth (e.g.,
no details on follow-up support in the household andthe community for infants with LBW). However, this is
not an absolute gap: some guidance we identified
supported health and feeding of vulnerable infants
u6m that could be applied to the mother-infant
circumstances. However, for practitioners to ‘join
these dots’, a ‘handshake’ between policy guidanceis needed, in the form of a clearer description of how
to apply continuity of care, connecting care providers
across services and time.
An infant who is SGA was not well-represented inpolicy guidance, and the management of infants
born preterm had low coverage. This is worrying
given the increased immediate and continuous
vulnerability of both preterm and SGA babies [2].
Moreover, LBW is essentially being underweight atbirth and it falls under newborns rather than our “lowanthropometry or poor ponderal growth” category.
However, infants with LBW or who are underweightat birth continue to be underweight after birth untilcatch-up growth, which usually is slow. Furthermore,even when catch-up growth (catching up to normal
birth weight peers) has been achieved, these infantsremain at higher risk of death, making active growth
surveillance embedded within healthcare even morecritical for these babies [30]. If practitioners are toheed the recent call to action in the 2023 Lancet
Small Vulnerable Series to attend to small vulnerable
newborns worldwide, while acting to prevent babies
being born too soon or too small, they must also beequipped to assess and care for them when they are
identified, and to continue care within and acrossservices as long as is needed [31]. Our review suggeststhat policy guidance is not (yet) fit for that purpose.

A far more holistic and person-centred approach(i.e. what are her needs?) is needed to address wider
vulnerabilities. Identification of an at risk infant is amarker of vulnerability of a mother–infant pair: it
offers an opportunity to target support to a woman
for her personal benefit, as well as that of her baby.
Such an approach can provide an entry point fortargeted support to more vulnerable women who
are mothers, help sustain continuity of care in the
postnatal period [27] and help to redress prevalentneglect of women’s wellbeing in services [28, 29].

e mindfully muddled through the“Wpolicy
guidance swamp.
”

22

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

4.5 Continuity of care – present
in principle, missing in practice

The lack of guidance on growth may also reflectthat policy guidance mostly focus on the specificcondition (e.g., medical condition, breastfeedingproblem), rather than on comprehensive dimensionsof wellbeing or person-centred care. Guidelines
address specifically defined priority questions that
may not address growth; derivative guidance may
retain guideline boundaries and not be locatedwithin the wider context of care. Also, guidance
may be confined to a narrow time-bound period(e.g., where the growth monitoring potential may belimited) and not consider what happens next. Ourfinding may also indicate that health practitioners
perceive anthropometry and growth as a nutritional
issue, rather than a wider marker of poor growth anddevelopment, illness and death.

We struggled to conclude, based on our review, if andto what extent policy guidance supports continuityof care between mother and infant, and infant fromnewborn to six months of age, and beyond. Continuityof care was either absent in the documents
reviewed, mentioned to varying degrees as a guiding
principle, or stated as an intention. Overall, there
was vagueness on the ‘what’ and ‘how’ in regard toachieving continuity of care, or on where to locate
appropriate guidance for this. Policy guidance largely
focused on a vulnerability and how to handle it. If
we presume this is framed within an intent towards
continuity of care, there is content to leverage ifclearer guidance is provided on how to realise this.

Given the growing evidence that weight-for-age isa critical indicator of vulnerability in infants u6m [32],there is a strong rationale for embedding consistentanthropometric assessment and responsive growthmonitoring within all relevant policy guidance, anda strong need to do so.

4.6 Poor growth reflects morethan poor nutrition
We found low coverage of infant nutritional status
and related care practices in priority policy guidance.
This finding may reflect that while the nutrition worldis dominated by anthropometry, the nutritional status
of infants (i.e., anthropometry, nutritional oedema andponderal growth) are not sufficiently considered as
general vulnerability factors within health circles. Only
three priority policy guidance documents featured low
anthropometry or poor growth as vulnerability factors,of which one was the 2023 WHO wasting guideline.

the heightened vulnerability“Gofiven
LBW infants, which continues

well beyond birth, active growthmonitoring and assessment offers
a critical opportunity for health andnutrition surveillance and timely
support, which is being missed.

Policy guidance and manuals that focused on clinicalhealth conditions including feeding difficulties had low
coverage of growth assessment and management.
For example, “low anthropometry” or “poor ponderal
growth” were not included as vulnerability factors
or care considerations in perinatal guidance, except
for LBW, which is essentially underweight at birth,and hence categorised as a birth vulnerability
factor (see 4.4). However, in these instances, LBW
was included as a single timepoint measure (atbirth) for identifying risk but the documents neither
recommended subsequent sequential monitoringof growth post birth, nor discussed how to factor
in growth retardation for catch-up growth. Given
the heightened vulnerability of these infants, which
continues well beyond birth, active growth monitoring
and assessment offers a critical opportunity for healthand nutrition surveillance and timely support, which is
being missed. Also, even where some indicators wereconsistently included across guidance, different cutoffs were used which hamper continuity of care.

”

23

5

Looking ahead: to what extent could
policy guidance support continuity of care?
In conducting this scoping review, we found that identifying policy guidance that
supports continuity of care of vulnerable infants u6m and their mothers was fuzzy,
messy and unpredictable, creating a complex web we had to muddle through.
We have embraced this complexity [19] to make sense of it and to identify whatmight help to improve understanding of it in future. In doing so, we recognise ourlimitations in terms of scope, depth of appraisal, what we know and what we do
not know. We hope others can draw upon, build upon, and shed further light on ourefforts, and can take some constructive next steps. If you spot any errors, gaps or
misunderstandings, please let us know.

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

5.1 Some considerations

The person-centred focus taken to the app
development was a critical means to help navigate
existing guidance and develop clinical decision
support for frontline health workers. There may
be many more examples to draw upon.

Urgency
Developing coherent policy guidance at global level,
involving different disciplines and expertise, should
be an ambition for us all, but this is a long-term aim.
The practical reality is that in the immediate term,
policy guidance will continue to be developed along
specialities, in different processes, with different
expert groups. We need to secure connections
and collaborations between, and transparency of,content and efforts, without paralysing or further
complicating the already heavy processes involvedin policy guidance development. With immediacy,
we need coherent implementation guidance oncomprehensive quality care of the mother–infant pair,
to mitigate against disconnected implementation,
maximise synergies, and work together to addresscritical gaps. The time-sensitive opportunities
provided by current United Nations-led initiatives
identified in our introduction highlight the urgencyof this need, and offer an immediate opportunity
towards achieving this ambition.

Living guidelines: helping to makethis work
WHO is committed to eventually managing
all guidelines as ‘living guidelines’, to update
recommendations in a timely fashion, as evidence
emerges (i.e., update specific recommendations
rather than update the whole guideline) [34].
While having many benefits, this updating
system potentially adds even more complexity
for practitioners in regard to staying informed
and navigating new recommendations, and risks
becoming a ‘living nightmare’ if the practicalities, indifferent implementation realities, are not addressed[25]. Guidelines are now available on the MagicApp
platform [35], greatly improving their accessibility.
However, it is not clear how a practitioner will bemade aware of and apply what may be sporadicchanges, or how a recommendation change may
affect other recommendations within the sameguideline or across guidelines.

Person-centred guidance in practiceIn our review, we observed a tendency for global
policy guidance to consider and frame carearound the infant and/or mother but then to takeon a disease focus and centre managementon the condition (illness or risk factors). This isunderstandable from a guideline perspective on‘what’ to do, but the closer it gets to implementation,
the more the focus needs to shift to person-centredcare – with the focus needing to be on how services
should convene and converge around the effective
and perceived needs of the mother and the baby.

With all this in mind, we pondered how to improve thetranslation of a rich, intriguing web of policy guidance
into coherent, practical implementation protocols,
guidance, tools and support. Below, we share a few
of our suggestions for consideration at global andimplementation (including national) level.

5.2 Global-level suggestions
A conceptual living map of global
policy guidance

How would person-centred policy guidance look inpractice? One example to draw upon is the WHOled development of the Clinical Care in Crises(CCC) digital mobile reference application, which iscurrently being piloted [33]. This app aims to provide
clinical decision support to frontline health workers
in emergencies, increasing the accessibility of WHO
recommendations and facilitating their application.
Development of the CCC app involved studying andcollating the details of various relevant WHO policy
guidance to create comprehensive care pathways.
Expert consultation assisted in handling evidence
gaps and making emergency-specific adaptations.

We suggest the development of an all-enveloping,visual, interactive conceptual map of policy guidancefor vulnerable infants u6m and mothers (in all theirshapes and forms), which could massively help
individuals to access existing policy guidance andnavigate their contents. This online platform could
encompass:• M aterials: the existence and location of all relevant
policy guidance, including translations of that
guidance;• Process: schedules, timelines, who is doing what,
when (e.g., across WHO updates, processes,
collaborations, partnerships); and• Updates: alerts in real time about what changed
and why.

25

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Distinguishing between guidelinesand guidance by content

Such a platform could help to create partnerships,
promote collaboration and coordination, as wellas support development or update of policies, andultimately facilitate good practices.

Guidelines are the products of people. The outcome
is determined by the experience and expertise of
those who convened to appraise the evidence, whichis inherent in the collective appraisal and decisionmaking process [37]. In our experiences of guideline
development processes (HD, MM), the level of detailprovided in a guideline is not standardised, andhence open to individual and collective interpretation
by both facilitators and experts. In the interests ofproducing usable, workable guidelines, there is achance of straying into implementation guidance
territory. There may be a tendency towards this where
there are gaps in evidence or when conditional
recommendations or good practice statements
cover contextual nuances. The problem with thisis that normative guidelines, by their nature, areconfigured to address narrowly defined questions oncare, rather than the totality of care. The developmentof implementation guidance itself may require adifferent or expanded practitioner-centric collective.
Strong objective facilitation in the guideline process
will help to ensure that guideline content focuses onwhat is needed to guide policy decision-makers to
inform implementation modalities to achieve thebest outcomes in their reality.

Why is this needed? There is currently limited visibility
on processes and timelines for the development of
global guidance, which hampers collaboration. While
we highlight opportunities for synergies between
guidance development processes, much is basedon ‘grapevine’ intelligence gathering – there is muchthat we know we don’t know. In practice, we haveexperienced both openness and resistance when
we have ‘sniffed out’ opportunities to collaborateand ‘knocked on doors’. This may well reflect thebusyness and pressure on people (from donors,
peers) to deliver outputs fast: involving others brings
complexity, takes time and has costs, both for thosewithin the lead institutions and for those external
to them.
Also, if – and the extent to which – guidance
documents refer to each other is not consistent. This
limits the ability to ‘connect the dots’ between them.
It limits collaboration to those within ‘circles of friends’
or ‘in the know’, which that greatly limits potential andisn’t fair. Given that WHO is actively moving towards
living guidelines, references can soon become
outdated, and new guidance may not reflect these
new changes. A practical conceptual map, as astanding reference embedded in all guidance,
could help address this.

Collaboration as an institutional
requirement

WHO, as the global publisher of normative guidelinesand derivative guidance, would be well placed to leadand manage such a platform. Indeed, WHO could
lead by example by both facilitating collaboration
through this platform and ensuring collaboration
happens within its own processes. Within WHO, one
possibility may be to have this development overseen
by WHO’s Strategic and Technical Advisory Group for
Maternal, Newborn, Child and Adolescent Health andNutrition (STAGE) [36].

There is a wealth of inter-related but disconnected
policy guidance on care of vulnerable infants andtheir mothers, generated by various departments
within WHO. This is an observation and not a criticism,and it reflects the complexity and practical difficulties
of working together on developing collaborative policy
guidance, even with the best of intentions. Whether
collaboration happens, and the degree to which
it does, is too dependent on individuals, and is notinstitutionalised within agencies or sectors. There are
numerous positive examples of collaboration initiatedand driven by individuals, but dependence on
personal commitment is not sufficient. Collaboration
across sectors and specialities needs to be an
institutional requirement, not an optional extra. Aninter-departmental approach is urgently needed tohighlight the importance of achieving holistic care forthese children, and to coordinate action to achievethis. This requires teams and sectors to be adequately
resourced to facilitate this, and reasonable timelines
to accommodate it.

26

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Person-centred continuity of care in service
delivery requires policy coherence, which will begreatly aided by aligned global policy guidanceon care for vulnerable infants and their mothers.
Developing sector- or discipline-specificimplementation guidance and related resources
is understandable and necessary. However, typical
processes risk missing opportunities to collaborate
and align resources and to avoid duplication andinconsistencies. The active WHO-led/co-led guidance
initiatives on infant health and nutrition (such as on
wasting/poor growth and development, IMCI, andSSN) present a wonderful (and critical) opportunity
to develop complementary, cohesive and efficientinter-departmental guidance at global level andto facilitate coherent policy action and practice atnational level.

The active rollout of the 2023 WHO wasting guideline
by UNICEF and WHO at regional and country levelprovides a wonderful opportunity to connect andcollaborate at country level to generate personcentred practical guidance that is simplified andcontextualised to the setting. The expanded scopeto the “management of infants u6m at risk of poor
growth and development” is particularly conducive tocross-departmental collaboration at WHO and crossservice alignment in countries. We are aware of – orat least suspect the existence of – similar initiatives
involving SSNs, LBW infants, quality of care, andmaternal health. It is critical that those supporting
national guidance development initiatives invest time inscoping and navigating relevant local policies, priorities
and plans, and together broker how to translate into
workable streamlined person-centred guidance.

5.3 Implications for uptakeof guidance at national levelby health managers andpractitioners

t is critical that those supporting“Inational
guidance development

We hope the learning from this scoping review will be
helpful to those who are navigating the complexitiesof translating guidelines into context-adapted
guidance and good practices at country level. We
have compiled priority guidance online for easy
access. Our more detailed databases appraisingcontent are available on request.

initiatives invest time in scoping
and navigating relevant local
policies, priorities and plans, andtogether broker how to translate
into workable streamlined personcentred guidance.

”

We assume that the complex landscape of policy
guidance at global level may add to existing
complexities at national level when it comes toimplementation. Different stakeholders operate within– and involve – various departments, specialities,
divisions and budgets. Initiatives relating to policy
and service development regarding quality of care,small and sick newborns, LBW, and wasting– which
are all relevant, but which often involve different
stakeholders at country and global level (including
funding agencies) – affect what is actually done.
What guidance looks like and why varies greatly.
There is a trend whereby many national guidelines(or protocols) are written as comprehensive manuals,
rather than guidance, detailing the how but also
explaining the why. This was established as it wasoften preferred by national stakeholders, since it fills
a gap in cases where the contents are not covered
in professional education and training curricula.

27

6Conclusions: joining the dots, filling the gaps
This scoping review proved a challenging but worthwhile policy expedition,
identifying a gap in regard to coherent policy guidance for vulnerable infants
u6m and their mothers.

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

We found a rich melting pot of valuable policy
guidance relevant to the care of vulnerable infants
u6m across sectors and specialities that needs to beconnected. The significant gaps in regard to content
that addresses mothers as part of a mother–infant
pair needs to be addressed. We have compiled andmade available the policy guidance and have shareddetails of our classification, to help others navigate
the muddy waters. Approach our work with an open
mind, and don’t be restrained by the confines ofdescriptors and sources.
There is huge potential to connect existing policy
guidance and processes to facilitate continuity andcoherence across the various disciplines. We hope
this scoping review will contribute to improving
the accessibility of relevant guidance for the careof vulnerable infants u6m and their mothers, andto creating cohesion and collaboration acrossdisciplines. We see a critical window for applying
a continuity of care approach that connects theprocesses of developing guidance on LBW, small andsick newborns, IMCI and wasting that are underway
at WHO., and to have a person-centred lens andapproach to the development of implementation
guidance to support uptake at national level. We arecommitted to working with – and within – all due
processes at global and country levels whereverthis would be helpful.
This is an urgent need. We cannot unsee what
we have seen. We feel a sense of responsibility.
We commit to report back on what happens next
(or not).

29

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Annexes

Clinical pathway: A clinical pathway is definedby five criteria: (1) the intervention is a structured
multidisciplinary plan of care; (2) the intervention
is used to translate guidelines or evidence into
local structures; (3) the intervention details thesteps in a course of treatment or care in a plan,pathway, algorithm, guideline, protocol or other“inventory of actions”; (4) the intervention has
timeframes or criteria-based progression; and(5) the intervention aims to standardise care fora specific clinical problem, procedure or episodeof healthcare in a specific population. Other
terminology used: “protocols”, “care model”, “caremap”, “multidisciplinary care”, “evidence-based care”
and “guideline”. (Kinsman, L., et al. What is a clinicalpathway? Development of a definition to inform thedebate. BMC medicine. 2010 Dec;8(1):1-3)

Annex 1: Working definitions
Antenatal care: Antenatal care targets pregnant
woman from eight to 12 weeks of gestation to birth,with eight visits being recommended. (WHO. WHO
recommendations on antenatal care for a positive
pregnancy experience. Geneva: WHO; 2016)
Assumption: An assumption is something that you
accept as true without question or proof. (Cambridge
Dictionary. Available from: http://dictionary.
cambridge.org/dictionary/english/).
Care: For the purpose of this review, care covers
health and nutritional care for infants u6m, andphysical and mental health, nutrition, and social carefor their mothers, addressed in community or primarycare settings. (MAMI Global Network, ENN, LSHTM.
MAMI Care Pathway Package, Version 3; 2021.
www.ennonline.net/mamicarepathway).

Collaborative care: Collaborative care brings
together professionals and/or organisations to workin partnership with people to achieve a common
purpose. (WHO. People-centred and integrated healthservices: an overview of evidence. An interim report.
Geneva: WHO; 2015)

Caregiver: A caregiver is a person who is very
closely attached to a child and responsible for thechild’s care and support. Primary caregivers include
parents, families and other people who are directly
responsible for the child at home. They also include
carers outside the home, such as those working inorganised childcare. (UNICEF, WHO. Nurturing carepractice guide: strengthening nurturing care throughhealth and nutrition services. Geneva: UNICEF and
WHO; 2022)

Community-based care: For the purpose of thisreview, community-based care refers to local,
decentralised community services, including
preventative, promotive, supportive and curative
healthcare. (Woeltje, MM., et al., Community-based
management of acute malnutrition for infants u6mof age is safe and effective: analysis of operational
data. Public Health Nutrition. 2023;26(1):246-255)

Childhood disabilities: Childhood disabilities are
any difficulty experienced in any three areas offunctioning – impairment, activity limitation andrestricted participation – as a result of a healthcondition and the interaction of this with theenvironment. It includes chronic health conditions
such as asthma, diabetes, epilepsy and obesity.
(UNICEF, WHO. Nurturing care practice guide:strengthening nurturing care through health andnutrition services. Geneva: UNICEF and WHO; 2022)

Competency: A competency is the capability to use
a set of related knowledge, skills and behaviours
to successfully perform identified jobs, roles or
responsibilities. (WHO. Roles and responsibilities ofgovernment chief nursing and midwifery officers: acapacity-building manual. Geneva: WHO; 2015)
Complex system: A complex system is a collectionof individual elements (agents) with the freedom
to act in ways that are not always predictable
and whose actions are interconnected so that
one agent’s actions change the context for otheragents. Characteristics of complex systems are selforganisation, constant change, feedback loops, nonlinearity, time lags between inputs and outcomes,
history (path) dependence, and unintended
consequences, shaping and being shaped by thecontext. A complex adaptive system adapts, learns
and evolves with time, showing new emergent
behaviours. (Plsek, P., Greenhalgh, T. Complexity
science: The challenge of complexity in health care.
British Medical Journal. 2001;323(7313):625-8)

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Condition: A condition can be a disease, disorder,
injury, disability, or any other health problem that
affects a person’s physical, mental, or social wellbeing.
It can be classified according to different criteria,such as the cause, the symptoms, the duration, theseverity, the impact, or the treatment. For example, acondition can be infectious or non-infectious, acuteor chronic, mild or severe, preventable or incurable,communicable or non-communicable (https://www.
who.int/publications-detail-redirect/WHO-2019nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1 and https://www.who.int/healthtopics/coronavirus). It is any deviation(s) from anormal state of health or wellbeing. A condition can bea disease, disorder, injury, disability, or any other healthproblem that affects a person’s physical, mental, or
social wellbeing. (WHO. A clinical case definition of post
COVID-19 condition by a Delphi consensus. Geneva:
WHO; 2021).

Coverage: Coverage is the extent of interaction
between the service and the people for whom it isintended. Coverage is not to be limited to a particular
aspect of service provision, but ranges from resource
allocation to the achievement of the desired
objective. Health coverage for people with healthneeds can be differentiated as follows:• A vailability (or geographic) coverage: having theservice available.
• Accessibility coverage: able to use the service,with the determining factors of distance, financial
reasons, socio-cultural values and norms.
• Acceptability coverage: willing to use the service.
• Contact coverage: using the service.
• Effectiveness coverage: receiving effective care.
(Tanahashi, T. Health service coverage and its
evaluation. Bulletin of the World Health Organization.
1978;56(2):295; and WHO. Health Systems
Strengthening Glossary. WHO; 2011. Available at: https://
cdn.who.int/media/docs/default-source/documents/
health-systems-strengthening-glossary.pdf).

Continuity of care: Continuity of care is a term used
to indicate one or more of the following attributes ofcare: (i) the provision of services that are coordinatedacross levels of care (primary care and referral
facilities), and across settings and providers; (ii) the
provision of care throughout the life cycle; (iii) carethat continues uninterrupted until the resolution of an
episode of disease or risk; (iv) the degree to which aseries of discrete health care events are experienced
by people as coherent and interconnected overtime, and are consistent with their health needs andpreferences. (WHO. Health Systems Strengthening
Glossary. WHO; 2011. Available at: https://cdn.who.int/
media/docs/default-source/documents/healthsystems-strengthening-glossary.pdf).

Embedding: Embedding is the process through whicha practice or practices become (or does/do not
become) routinely incorporated in everyday work ofindividuals and groups. (May, C.R., et al. Developmentof a theory of implementation and integration:
Normalization Process Theory. Implementation
Science. 2009;4(1):29). Embedding is making
something an integral part of something else, anddescribes how something is placed within somethingelse. (Greenhalgh, T. et al., Beyond adoption: A new
framework for theorizing and evaluating nonadoption,
abandonment, and challenges to the scale-up,
spread, and sustainability of health and caretechnologies. J Med Internet Res. 2017;19(11):e367)

Continuum of care: The continuum of care is thesystem that provides a comprehensive range ofhealth services, so that care can evolve with thepatient over time. With the understanding that apatient’s health may be most vulnerable duringgaps in care, the continuum of care exists to ensure
those gaps are filled. It means maintaining continuityof the medical care delivered to the patient,
especially when switching between caregivers or
care. (MJHS. Continuum of Care: the importance of
seamless, uninterrupted care. Available at: https://www.mjhs.org/resource/continuum-of-carethe-importance-of-seamless-uninterruptedcare/#:~:text=Essentially%20a%20continuum%20of%20
care,ensure%20those%20gaps%20are%20filled).

Essential newborn care: Essential newborn carecovers immediate newborn care (thorough drying,skin-to-skin contact of the newborn with the mother,delayed cord clamping, hygienic cord care); neonatal
resuscitation (for those who need it); early initiationand support for exclusive breastfeeding; routine care
(Vitamin K, eye care and vaccinations, weighing andclinical examinations); prevention of mother-tochild transmission of HIV; assessment, management
and referral of bacterial infections, jaundice anddiarrhoea, feeding problems, birth defects and otherproblems; pre-discharge advice on mother and baby
care and follow-up. (WHO. Essential newborn care.
WHO; 2024. Available at: https://www.who.int/teams/
maternal-newborn-child-adolescent-health-andageing/newborn-health/essential-newborn-care).

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Extremely low birth weight: Extremely low birthweight is a weight at birth of less than (<) 1.0 kg.
(https://www.cedars-sinai.org/health-library/diseases-and-conditions---pediatrics/l/low-birthweight.html).

Integrated care pathway: An integrated care pathway
is a structured multidisciplinary care plan that details
essential steps in the care of a patient with a specificclinical problem and that describes the expected
progress of the patient. Campbell, H. et al. Integrated
care pathways. Bmj. 1998;316(7125):133-7)

Extremely preterm: Extremely preterm is being bornat <28 weeks gestation (https://www.who.int/newsroom/fact-sheets/detail/preterm-birth).

Integrated service (integrated care): This is the
management and delivery of health services (care)such that people receive a continuum of healthpromotion, disease prevention, diagnosis, treatment,disease management, rehabilitation and palliative
care services through the different levels and sites ofcare within the health system and according to theirneeds throughout the life course. (WHO. Integrated
health service. What and why? Technical brief 1.
Geneva: WHO; 2008)

Family-centred approach: A family-centred
approach includes policies, procedures and practices
tailored to focus on children’s and families’ needs,
beliefs, and cultural values. This approach means
working in partnership with families, and recognisingand building on their strengths. (WHO, UNICEF, WorldBank Group. Nurturing care for early childhood
development: a framework for helping children
survive and thrive to transform health and humanpotential. Geneva: WHO; 2018).

Integrating: Integrating is to make into a whole bybringing different parts together (or merging them);
integration is the action or process of integrating.
Integration can evolve from assimilation (take in andunderstand fully) through adoption (choose to takeup or follow) to normalisation (make ideas or actions
appear culturally “normal”) (www.thefreedictionary.
com).

Family-centred care: Family-centred care is anapproach to care delivery that promotes a mutually
beneficial partnership among parents, families andhealthcare providers to support healthcare planning,delivery and evaluation. The principles of familycentred care include: dignity and respect; information
sharing; participation; and collaboration. It can bepractised in health facilities at all levels. (WHO. Survive
and thrive: transforming care for every small and sicknewborn. Geneva: WHO; 2019).

Integration: Integration is the process by which apractice or practices are reproduced and sustained
among the social matrices of an organisation or
institution. (May, C.R. et al. Development of a theoryof implementation and integration: Normalization
Process Theory. Implementation Science. 2009;4(1):29)

Hypothesis: A hypothesis is an idea or explanation
for something that is based on known facts but which
has not yet been proved. (Cambridge Dictionary.
Available at: https://dictionary.cambridge.org/
dictionary/english/hypothesis).

Intensive newborn care: Intensive newborn careincludes advanced feeding support (e.g., parenteralnutrition); mechanical/assisted ventilation, including
intubation; screening and treatment for retinopathyof prematurity; surfactant treatment; investigationand management of birth defects; paediatric surgery;
genetic services. (https://en.wikipedia.org/wiki/
Neonatal_intensive_care_unit).

Implementation: Implementation is the socialorganisation of bringing a practice or practices into
action. (May, C.R. et al. Development of a theory of
implementation and integration: Normalization Process
Theory. Implementation Science. 2009;4(1):29).

Low birth weight: Low birth weight is a weight at birthof <2.5 kg. (https://www.who.int/data/nutrition/nlis/
info/low-birth-weight).

Infant: For the purposes of this review, an infant is ayoung child below one year of age, from zero to one
year of age. (Cambridge Dictionary. Available at:https://dictionary.cambridge.org/dictionary/english/
infant).

Maternity care: Maternity care is the care provided
by health professionals to pregnant women during
pregnancy, childbirth, and the postnatal period.
(https://www.nhs.uk/pregnancy/your-pregnancycare/your-antenatal-care/).

Innovation: Innovation refers to health interventions
or practices that are being tested in a pilot project or
research, or a package of interventions that is new
in the local setting. (WHO, ExpandNet. Beginning withthe end in mind: planning pilot projects and otherprogrammatic research for successful scaling up.
WHO; 2011)34

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Neurodevelopment: Neurodevelopment refers to thebrain’s development of neurological pathways that
influence performance or functioning (e.g., intellectual
functioning, reading ability, social skills, memory,
attention or focus skills). When you learn to do justabout anything, you are improving neurodevelopment.
(BCPN. Neurodevelopment). (https://www.bcpn.org/
what-is-neurodevelopment-.html).

Person-centred care: Person-centred care isan approach to care that consciously adopts
individuals’, families’ and communities’ perspectives
as participants in and beneficiaries of trusted healthsystems. This perspective can be characterised bydimensions such as respect for patients’ values,
preferences and expressed needs in regard tocoordination and integration of care, information,communication and education, physical comfort,
emotional support and alleviation of fear andanxiety, involvement of family and friends, transitionand continuity. (Social Care Institute for Excellence.
Person-centred care: Social Care Institute for
Excellence; 2023. Available from: https://www.scie.org.
uk/prevention/choice/person-centred-care). 	 

Newborn care: Newborn care is care for the newbornfrom birth up to 28 days. (WHO. Essential newborn care.
WHO; 2024. Available at: https://www.who.int/teams/
maternal-newborn-child-adolescent-health-andageing/newborn-health/essential-newborn-care).
Newborn, neonate: A newborn or neonate is an infant
less than four weeks old; i.e. less than 28 days old, orfrom zero to 28 days old. (WHO. Essential newborn care.
WHO; 2024. Available at: https://www.who.int/teams/
maternal-newborn-child-adolescent-health-andageing/newborn-health/essential-newborn-care).

Postnatal care: Postnatal care is maternal careprovided from birth up to eight weeks; three
additional visits are recommended. (https://www.nice.
org.uk/guidance/ng194/resources/postnatal-carepdf-66142082148037).

Nurturing care: Nurturing care provides anenvironment created by caregivers ensuringchildren’s good health and nutrition, protects themfrom threats, and gives them opportunities for earlylearning, through interactions that are emotionally
supportive and responsive. (WHO, UNICEF, WorldBank Group. Nurturing care for early childhood
development: a framework for helping children
survive and thrive to transform health and humanpotential. Geneva: WHO; 2018).

Preterm: Preterm is an infant born <37 weeks ofgestation. (https://www.who.int/news-room/factsheets/detail/preterm-birth).
Primary care: Primary care refers to essential, firstcontact care provided in a community setting. (WHO.
Health promotion glossary of terms 2021. Geneva:
WHO; 2021)
Primary healthcare: Primary healthcare is thefirst point of contact for patients seeking medical
attention. (https://www.england.nhs.uk/).

People-centred care: People-centred care isfocused and organised around the health needs
and expectations of people and communities, rather
than diseases. It encompasses clinical encounters
as well as attention to the health of people in theircommunities and their crucial role in shaping healthpolicy and health services. (WHO. People centred carein low- and middle-income countries. Meeting report.
Geneva: WHO; 2010).

Quality control: Quality control is a mechanism formonitoring and regulating the provision of qualitycare, such as accreditation and/or licensing ofhealthcare facilities and/or healthcare professionals.
(Network for Improving Quality of Care for Maternal,
Newborn and Child Health. Implementation guidance:
Improving quality of care for maternal, newborn andchild health. 2017).

Perinatal period: The perinatal period is the period
starting from pregnancy at 22 weeks of gestation up
to seven days (six weeks) postnatal. (https://www.
sabp.nhs.uk/our-services/mental-health/perinatal/
what-does-perinatal-mean).

Quality improvement: Quality improvement isa systematic, formal approach to the analysis
of practice performance and efforts to improve
performance. A variety of approaches – also known
as quality improvement interventions – exist to
help collect and analyse data and test change.
(Network for Improving Quality of Care for Maternal,
Newborn and Child Health. Implementation guidance:
Improving quality of care for maternal, newborn andchild health; 2017).

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Quality of care: Quality of care is the degree towhich health services for individuals and populations
increase the likelihood of desired health outcomes
and are consistent with current professional
knowledge. (Institute of Medicine. Medicare: A
strategy for quality assurance, volume I. Lohr KN,
editor. Washington, DC: The National Academies
Press; 1990.) Overarching attributes of quality of careare effectiveness, efficiency, accessibility, person/
people-centred care, equity and safety (WHO. Qualityof care: WHO; 2023.) Quality of patient care focuses
mostly on technical quality, appropriate referral,
continuity of care and patient-centredness (Kruk, M.E.,
Freedman, L.P. Assessing health system performancein developing countries: a review of the literature.
Health Policy. 2008;85(3):263-76).

Secondary prevention: Secondary prevention aims
to reduce the impact of a disease or injury that has
already occurred. Primary prevention activities stop
the illness (condition) happening, while secondary
prevention activities stop the illness (condition)
getting worse. (https://cks.nice.org.uk/topics/misecondary-prevention/).
Sick infant, sick child: A sick infant or sick childis a sick infant under two months of age or a sickchild from two months to 59 months of age (WHO.
Integrated Management of Childhood Illness:management of the sick young infant aged up to 2
months. IMCI chart booklet. Geneva: WHO; 2019).
Small for gestational age: Small for gestational age
is an infant with a birth weight <10th percentile for
gestational age. (https://www.rcog.org.uk/guidance/browse-all-guidance/green-top-guidelines/smallfor-gestational-age-fetus-investigation-andmanagement-green-top-guideline-no-31/).

Quality planning: Quality planning is a systematic
process that translates quality policy into measurable
objectives and requirements and lays down asequence of steps for realising them within a
specified time frame. (Network for Improving Qualityof Care for Maternal, Newborn and Child Health.
Implementation guidance: Improving quality of carefor maternal, newborn and child health. 2017).

Special newborn care: Special newborn careincludes thermal care; comfort and pain
management; kangaroo mother care; assisted
feeding for optimal nutrition (cup feeding andnasogastric feeding); safe administration of oxygen;
prevention of apnoea; detection and managementof neonatal infection; detection and managementof hypoglycaemia, jaundice, anaemia and neonatal
encephalopathy; seizure management; safe
administration of intravenous fluids; detection andreferral management of birth defects. (https://www.
nhs.uk/pregnancy/labour-and-birth/after-the-birth/
special-care-ill-or-premature-babies/).

Scale-up: Scale-up is the deliberate effort toincrease the impact of a health service innovation(successfully tested in a pilot or experimental project)
to benefit more people and foster lasting policy andprogramme development. (WHO. Practical guidance
for scaling up health service innovations. Geneva:
WHO; 2009).
Scoping review: A scoping review is a type of
research synthesis that aims to “map the literature
on a particular topic or research area and provide
an opportunity to identify key concepts; gaps in the
research; and types and sources of evidence to inform
practice, policy-making, and research”. (Saluja, K. et
al. Improving WHO’s understanding of WHO guideline
uptake and use in Member States: a scoping review.
Health Res Policy Syst, 2022. 20(1): p. 98).

Systems thinking: Systems thinking is an approachto problem solving that views problems as partof a wider dynamic system, demanding a deep
understanding of linkages, relationships, interactions
and behaviours among the elements of the entire
system; its application accelerates a more realistic
understanding of what works, for whom, and underwhat circumstances; it goes beyond the input-black
box-output paradigm by opening the black box andconsidering feedback, processes, flows, control andcontexts. (de Savigny, D., Adam, T. Systems thinking for
health systems strengthening. Geneva: WHO; 2009).

Secondary healthcare: Secondary healthcare isprovided by medical specialists who do not have directcontact with a patient. (https://www.england.nhs.uk/).

Term gestation: Term gestation is an infant born
between 37 and 42 weeks of gestation since themother’s last menstrual period. (https://www.acog.
org/clinical/clinical-guidance/committee-opinion/
articles/2013/11/definition-of-term-pregnancy).

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Annex 2: Search terms
1	newborn* or new-born or neonat* or prematur* or
infant* or infancy or baby or babies or p?ediatric*.
2	low-birth-weight or LBW or prematur* or small-forgestational-age or SGA or small-for-age or SFA.
3	malnourished or malnutrition or severe malnutritionor severely malnourished or severe acutemalnutrition or SAM or moderate* malnutritionor moderately malnourished or moderate acutemalnutrition or MAM or acute malnutrition or acutely
malnourished or AM or severe wasting or severely
wasted or moderate wasting or moderately wasted
or wasting or wasted or thin* or stunting or stunted
or growth-failure or growth-falter* or poor growthor under-weight or failure-to-thrive or FTT or failureto-grow or growth delay or delayed growth or
nutrition*deficien* or micronutrient* deficien* or
nutritionally-at risk or nutrition disorder* or proteinenergy-malnutrition or PEM or development* delay
or delayed development or mid-upper-armcircumference or MUAC or weight-for-length or WFL.
4	(1 AND 2) OR (1 AND 3) [all vulnerable infants].
5	(mother* or matern*) ADJ2 (health or nutrition ormental-health or reproductive-health or food orsocial-assistance or social-welfare or nutrition or
malnutrition).
6	4 OR 5 [all vulnerable infants OR mothers].
7	policy or policies or guid* or strateg* or manual orframework or plan.
8	6 AND 7 [all vulnerable infants OR mothers AND
guidance].
7	Screen for identified documents relevant to infants
under six months of age at global level.

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Annex 3: Bibliography

2 Guidance and manuals
CBM. (2014). Recognising impairments at birth, fact
sheet and manual

Priority policy guidance
1 Guidelines

CBM (2012). Cerebral palsy, factsheet and manual –Part of the CBM Prevention Toolkit on Cerebral Palsy.

PAHO. (2021). Evidence-based Clinical Practice
Guidelines for the Follow-Up of At risk Neonates.
Abridged version. Pan American Health Organization.
Licence: CC BY-NC-SA 3.0 IGO

IASC. (2018). Inter-Agency Field Manual on
Reproductive Health in Humanitarian Settings.
MAMI Global Network, ENN, LSHTM. (2021). MAMI Care
Pathway Package, Version 3. ENN.

WHO. (2023). WHO guideline on the prevention andmanagement of wasting and nutritional oedema(acute malnutrition) in infants and children under 5
years. WHO.

Partners in Health, The Primate’s World Relief andDevelopment Fund, Rwanda Paediatric Association,
UNICEF, Grand Challenges Canada. (2020). The
Paediatric Development Clinic: Early Childhood
Development Support for High-Risk Infants within
Non-Communicable Disease Services. Protocol.

WHO (2021). Consolidated guidelines on HIV
prevention, testing, treatment, service delivery andmonitoring: recommendations for a public healthapproach. Licence: CC BY-NC-SA 3.0 IGO

SPOON. (2022). Identifying feeding difficulties in
infants- guidelines for healthcare professionals.

WHO. (2022). WHO consolidated guidelines on
tuberculosis. Module 5: management of tuberculosis
in children and adolescents. Licence: CC BY-NCSA 3.0 IGO

SPOON. (2022). Screening children for feeding
difficulties-guidelines for healthcare professionals.
UNICEF and University of Pretoria. (2022). Feeding
preterm and low-birthweight newborns: a one-stop
resource document for developing country-specificimplementation guidelines, protocols, standard
operating procedures and job aids. UNICEF.

WHO. (2022). WHO recommendations for care of thepreterm or low birth weight infant. Licence: CC BY-NCSA 3.0 IGO
WHO. (2021). Guideline: infant feeding in areas of Zika
virus transmission, second edition. Licence: CC BYNC-SA 3.0 IGO
WHO. (2020). Improving early childhood development:
WHO guideline. Licence: CC BY-NC-SA 3.0 IGO.

UNICEF. (2021). Integrating Eary Detection andTreatment of Child Wasting into Routine Primary
Health Care Services: A Resource Guide to Support
National Planning.

WHO. (2018). Guideline: counselling of women to
improve breastfeeding practices. Licence: CC BY-NCSA 3.0 IGO#

WHO. (2022) Guide for integration of perinatal mental
health in maternal and child health services. Licence:
CC BY-NC-SA 3.0 IGO

WHO. (2016). Updated guideline: paediatricemergency triage, assessment and treatment.

WHO. (2022). Pocketbook of primary health carefor children and adolescents: guidelines for healthpromotion, disease prevention and managementfrom the newborn period to adolescence. WHO
Regional Office for Europe.

WHO. (2015). Guideline: Managing possible serious
bacterial infection in young infants when referral is
not feasible.

WHO. (2022). WHO operational handbook on
tuberculosis. Module 5: management of tuberculosis
in children and adolescents. Licence: CC BY-NC-SA
3.0 IGO

WHO. (2015). WHO recommendations on interventions
to improve preterm birth outcomes.
WHO. (2012). Guidelines on basic newborn resuscitation.
WHO. (2012). Recommendations for managementof common childhood conditions: evidence fortechnical update of pocketbook recommendations:newborn conditions, dysentery, pneumonia, oxygen
use and delivery, common causes of fever, severe
acute malnutrition and supportive care.

WHO, UNICEF. (2020). Protecting, promoting andsupporting breastfeeding: the Baby-friendly Hospital
Initiative for small, sick and preterm newborns.
Licence: CC BY-NC-SA 3.0 IGO

38

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

WHO. (2019). Integrated Management of Childhood
Illness: management of the sick young infant aged
up to 2 months. IMCI chart booklet. Licence: CC BYNC-SA 3.0 IGO

WHO, UNICEF. (2019). Survive and thrive: Transformingcare for every small and sick newborn. Licence: CC
BY-NC-SA 3.0 IGO
WHO. (2019) Integrated Management of Childhood
Illness: Management of the Sick Young Infant Age up
to 2 Months: Facilitator Guide. Licence: CC BY-NCSA 3.0 IGO

WHO. (2016). Oxygen therapy for children: a manualfor health workers.
WHO, UNICEF, USAID, Save the Children. (2015). Caring
for newborns and children in the community: planning
handbook for programme managers and planners.

WHO, UNICEF, World Bank Group. (2018). Nurturing
care for early childhood development – A frameworkfor helping children survive and thrive to transform
health and human potential. WHO; 2018

WHO. (2014). Hospital care for mothers and newborn
babies: quality assessment and improvement tool: asystematic standard based participatory approach.
WHO Regional Office for Europe.

WHO. (2016). Early essential newborn care – First
embrace: Coaching for the first embrace, facilitator’s
guide Module 2. WHO-WPR.

WHO. (2014). Integrated management of childhood
illness – Chart booklet.

WHO. (2016). Standards for improving the quality ofmaternal and newborn care in health facilities.

WHO. (2013). Pocketbook of hospital care for children.

WHO, UNICEF. (2015). Caring for newborns and children
in the community: Caring for the child’s healthy
growth and development. A training course forcommunity health workers WHO.

WHO. (2002). Kangaroo mother care: a practical guide.

3 Enabling documents
FANTA III. (2018). Training Guide for Community-BasedManagement of Acute Malnutrition (CMAM), 2018
Version: training guide, handouts and slides.

WHO, UNICEF. (2014). Every newborn: an action plan toend preventable deaths.
WHO, UNICEF. (2011). Caring for newborns and children
in the community: Caring for the sick child in thecommunity. A training course for community healthworkers. WHO.

PATH. (2019). A Resource Toolkit for Establishing andIntegrating Human Milk Bank Programs.
Smile Train, SPOON. (2018). Supporting comprehensive
cleft care through nutrition and feeding: Training
manual and handouts. Smile Train. https://www.
smiletrain.org/sites/default/files/2021-01/nutritionfeeding-trainer-manual.pdf

Non-priority policy guidance
1 Guidelines

Smile Train, SPOON. (2018). Supporting comprehensive
cleft care through nutrition and feeding. Smile Train.

WHO. (2022). WHO recommendations on maternal
and newborn care for a positive postnatal
experience. Licence: CC BY-NC-SA 3.0 IGO

UNICEF, NEST360. (2021). Implementation Toolkit for
Small and Sick Newborn Care.

WHO. (2018). WHO recommendations on home-based
records for maternal, newborn and child health.
Licence: CC BY-NC-SA 3.0 IGO

UNICEF, WHO. (2020). Ending preventable newborn
deaths and stillbirths by 2030 – Moving fastertowards high-quality universal health coverage in
2020–2025. UNICEF.

WHO. (2017). Guideline: assessing and managing
children at primary health-care facilities to prevent
overweight and obesity in the context of the double
burden of malnutrition. Updates for the Integrated
Management of Childhood Illness (IMCI). Licence:
CC BY-NC-SA 3.0 IGO

WHO, UNICEF. (2020). Baby-friendly Hospital Initiative
training course for maternity staff: participant’s
manual. Licence: CC BY-NC-SA 3.0 IGO
WHO. (2020). Human resource strategies to improvenewborn care in health facilities in low and middleincome countries. Licence: CC BY-NC-SA 3.0 IGO

WHO. (2017). Guideline: protecting, promoting andsupporting breastfeeding in facilities providing
maternity and newborn services. Licence: CC BY-NCSA 3.0 IGO

WHO. (2020). Standards for improving the quality ofcare for small and sick newborns in health facilities.
Licence: CC BY-NC-SA 3.0 IGO

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

WHO. (2017). WHO recommendations on maternal
health: guidelines approved by the WHO Guidelines
Review Committee. WHO/MCA/17.10. Licence: CC BYNC-SA 3.0 IGO

WHO, Organization for Economic Co-operation andDevelopment (OECD), World Bank Group. (2018).
Delivering quality health services: a global imperative
for universal health coverage. WHO, OECD, and theWorld Bank. Licence: CC BY-NC-SA 3.0 IGO

WHO. (2017). WHO recommendations on newborn
health: guidelines approved by the WHO Guidelines
Review Committee.

WHO, UNICEF, World Bank Group. (2018). Nurturing
care for early childhood development: a frameworkfor helping children survive and thrive to transform
health and human potential. WHO. Licence: CC BYNC-SA 3.0 IGO

WHO. (2011). Guidelines on optimal feeding of lowbirth-weight infants in low- and middle-income
countries.

WHO, UNICEF. (2018). Protecting, promoting andsupporting breastfeeding in facilities providing
maternity and newborn services: implementing therevised Baby-friendly Hospital Initiative 2018. WHO and
UNICEF. Licence: CC BY-NC-SA 3.0 IGO

2 Guidance and manuals
ACF. (2014) Baby friendly spaces holistic approachfor pregnant, lactating women and their very young
children in emergency.

WHO. (2018). 2018 Global Reference List of 100 Core
Health Indicators (plus health-related Sustainable
Development Goals). Licence: CC BY-NC-SA 3.0 IGO

CBM. (2012). Primary Health: Preventing impairment
and disability, fact sheet and manual – Part of the
CBM Prevention Toolkit on “How to Improve the Healthand Development of your Child”. CBM; 2012.

WHO, UNICEF, UNFPA. (2017). Managing complicationsin pregnancy and childbirth: a guide for midwives
and doctors – 2nd ed. Licence: CC BY-NC-SA 3.0 IGO

HOLT International. (2022). The Child Nutrition
Program: Community Resource Manual. Holt
International.

WHO. (2017). Network for Improving Quality of Carefor Maternal, Newborn and Child Health. Improving
quality of care for maternal, newborn and childhealth: Implementation guidance.

HOLT International. (2019). Feeding and positioning
manual: Guidelines for working with babies
and children including “Child Nutrition Program:
Community Flipbook.

WHO. (2016). Interagency list of priority medical
devices for essential interventions for reproductive,
maternal, newborn and child health.

Infant Feeding in Emergencies Core Group. (2017).
Operational Guidance on Infant Feeding in
Emergencies (OG-IFE) version 3.0. ENN.

WHO. (2015). Pregnancy, childbirth, postpartum andnewborn care: a guide for essential practice – 3rd ed.

SPOON. (2021). Count me in – Brief.

WHO. (2009) Acceptable medical reasons for use ofbreast-milk substitutes (BMS).

UNICEF, WHO, UNESCO, United Nations Population
Fund (UNFPA), UNDP, UNAIDS, WFP and the World Bank.
(2010). Facts for life. UNICEF.

3 Enabling documents

WHO. (2022). Early essential newborn care: clinicalpractice pocket guide, 2nd edition.

USAID. (2022). A Shared Vision for Improving Perinatal
Mental Health in Low- and Middle-Income Countries:
A Theory of Change and Prioritized Implementation
Research. MOMENTUM.

WHO, UNICEF. (2020). Competency verification toolkit:
ensuring competency of direct care providers to
implement the Baby-friendly Hospital Initiative.
Licence: CC BY-NC-SA 3.0 IGO

USAID. (2022). Responsive Care and Early Learning
Addendum Training Package: DRAFT Facilitator’s
Guide.

WHO. (2019). Essential nutrition actions:mainstreaming nutrition through the life-course.
Licence: CC BY-NC-SA 3.0 IGO

WHO. (2021). Infant and young child feedingcounselling: an integrated course. Trainer’s guide,
second edition. Licence: CC BY-NC-SA 3.0 IGO

WHO. (2019). Network for improving quality of care formaternal, newborn and child health – quality of carefor maternal and newborn – a monitoring frameworkfor network countries.

WHO, UNICEF. (2015). Caring for newborns and children
in the community: Caring for the newborn at home.
A training course for community health workers.

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Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Annex 4: Variables used in theanalyses•	Maternal risks covered (e.g., nutritional risk,
impaired breastfeeding, physical health, maternal
mental health, multipara, primipara, <18 year,
absent, dead);

Variables used in the analyses are listed here, anddata sets are found in the Scoping Review Database(Excel) that is available upon request.

•	Interventions (e.g., active case finding or screening,
health assessment or IMNCI, breastfeeding
assessment, non-breastfed feeding assessment,
breastfeeding support, non-breastfed feeding
support, clinical care, nurturing care, ECD, crying
and sleep counselling, mental health counselling,social support, follow-up visits, home visits, family
involvement, continuity of care).

Phase 1: Appraising key characteristics(See Database, worksheets “Phase1-Guideline (a)”,“Phase1-Guidance&Manuals (b)” and “Phase1Enabling docs (c)”).
The data set included the following variables:

Phase 2: Describing vulnerability of infants
u6m and their mothers• Publication year;• URL;• Source;• Title;(See Database, worksheet “Phase2-Describing vuln(a+b)”)•	Type (e.g., action plan, framework, implementation
guidance, guideline, manual, report, training guide);

The data set included the following variables ofvulnerability:• Aim;

Poor birth outcome•	Topic (condition, disease, disorder, injury, disability,or profile of risk factors);

Small newborn:• Target audience;•	LBW <2.5 kg; LBW <2.0 kg; very LBW <1.5 kg; extremely
LBW <1.0 kg•	Target population (e.g., infant, mother (principal
caregiver), both);•	Preterm <37 weeks gestation; very preterm <33
weeks; extremely preterm <28 weeks•	Infant’s description (e.g., healthy newborn, healthy
infant, vulnerable newborn, preterm infant, LBW,
small, sick, (non)breastfed, wasted/acutely
malnourished, underweight, stunted, growth
faltering, at risk of poor growth and development,
feeding problem, excessive crying, disability, acuteor chronic illness);•	SGA (birth weight <10th percentile for gestationalage)
Sick newborn:•	Birth trauma or birth complications•	Congenital illness (e.g., congenital heart disease,
HIV, tuberculosis)•	Mother’s description (e.g., healthy, sick, mental
health issue, malnourished, adolescent, prenatal,
perinatal, postnatal issues, (not)lactating, absent,
multipara, primipara, absent, dead);•	Disability and/or congenital abnormality (e.g.,
tongue-tie, cleft palate)•	Macrocephaly head circumference (HC) (HC-forage z score >+3 or rapid crossing z lines (+1 or morez score change in 2 months))•	Sector (e.g., child health, child nutrition, childdevelopment, maternal physical health, maternal
mental health, maternal nutrition, reproductive
health, newborn/neonatal health);•	Microcephaly (HC-for-age z score ≤-3)
•	Morbidity related to prematurity•	Level of care (e.g., tertiary, secondary, primary orcommunity care)

Low infant anthropometry (including
nutritional oedema)•	Care service (e.g., maternity, child health, childnutrition units); level of care (e.g., inpatient,outpatient, community care);•	Nutritional oedema•	WAZ <-2; WAZ <-3• Age timeline covered;•	WLZ <-2; WLZ <-3•	Infant risks covered (e.g., LWB, preterm, SGA, growth
faltering (recent weight loss, poor growth, low WAZ,
low MUAC), feeding/metabolic problem, excessive
crying, disability, acute or chronic illness);•	MUAC <115 mm for infant 6 weeks-<6months

41

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Poor growth based on sequential measures ofponderal growth

Phase 3: Appraising guidance oncontinuity of care•	Recent weight loss (decreasing weight; downward
crossing growth lines)(See Database, worksheet “Phase3-Priority&Care (a+b)”)
The data set included the following variables:•	No weight gain on two consecutive measurements(stationary weight)•	Condition: How is the condition or risk profile
described (e.g., health problem, disease, disorder,
injury, disability)?

•	Insufficient weight gain (flat WAZ or WLZ growth;less than 500g/kg/month)•	Care across time, services and levels of care: Iscare being provided across services, levels of careand time (e.g., assisting referral, providing follow-up
post-exit/discharge, connecting to follow-on services
across health, nutrition, and social services)?

•	Insufficient weight gain for preterm (less than 18g/
kg/day and 0.9 cm/week in head circumference)

Risk factors for poor growth and development
Infant’s health and feeding risk factors:• I ntegrated care pathway: Does care cover assessing,classifying and/or acting on the condition, including
monitoring individual progress and outcomes?

•	Infant breastfeeding difficulties (e.g., attachment,
suckling reflex, refusal, intolerance)• C omprehensive person-centred care: Iscare organised around the health needs andexpectations of the person rather than disease(including a comprehensive assessment of aperson’s needs and building individual resilience;
involving a multidisciplinary team)?

•	Infant history of hospitalisation•	Infant IMCI danger sign or sign of acute medical
problem•	Infant medical problem needing mid-/long-termcare•	Infant mental health (e.g., excessive crying)• ECD: Is ECD incorporated into care?

•	Infant neurodevelopment concerns•	Mother (principal caregiver), father and family
support: Are the mother, father, and family
engaged in care?

•	Non-breastfed infants (e.g., unsafe preparation
and use of breastmilk substitute, access to breast
milk substitute)•	Community participation: Is the community
sensitised (aware) and involved in the provisionand organisation of care?

•	Severe ill infant and no referral possible
Mother’s health, feeding, nutrition, and social risk
factors:• E
 mbeddedness (mainstreaming in routine care):
Are practices incorporated into everyday work,building upon existing services (including practicalre-organisation of care and staff with new roles
and responsibilities; avoiding duplicative actions orvertical, disconnected service delivery)?

•	Lack of birth spacing•	Mother adolescent•	Mother dead or absent•	Mother’s breastfeeding concerns (e.g., attachment,
positioning, perceived breastmilk insufficiency,
mixed feeding, other ineffective feeding/time,
frequency)•	
Local health system support: Does the policy
guidance include strengthening the capacitiesof the local health system (e.g., on governance,
finances, information system, health workforce,
supplies and technology, and service delivery,
community participation)?

•	Mother’s birth complication•	Mother’s MUAC
•	Mother’s physical health (e.g., tuberculosis, HIV,disability)• M&E: Is M&E for quality improvement
comprehensively covered?

•	Mother’s social or contextual factors affecting withcare and feeding (other)•	
Wider multisectoral support: Is consideration
given to socioeconomic support and assistance(e.g., cash, food, income generation, maternity
leave, childcare for working mothers)?

•	Mother’s anaemia•	Mother’s mental health•	Multipara•	Organisational capacities, including resilience: Is
consideration given to developing or strengtheningorganisational capacities so they can better respondto (un)expected changes and absorb shocks?

•	Primipara

42

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Annex 5: Vulnerability factors across 34 priority policy guidance documents on care of vulnerable infants u6mand their mothers

Small for gestational age

Poor ponderal growth

Low anthropometry

Nutritional oedema

Breastfeeding difficulties

Illness

Not breastfed

Neurodevelopment concerns

Hospitalisation history

Mental health

Physical health

Mental healthSocial or contextual factors

Birth complication

AdolescentMultipara

Anaemia

Primipara

Birth spacing

Low Mid-upper arm circumferencePoor
growth anddevelopment

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2022 WHO Consolidated guidelines on
tuberculosis in children and adolescents

Tuberculosis

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2022 WHO Recommendations for care of thepreterm or low-birth-weight infant

Preterm, Lowbirth weight

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2021 WHO-PAHO Evidence-based clinicalpractice guidelines for the follow-up of at risk
neonates

Newborn care

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2021 WHO Guideline: Infant feeding in areas ofZika virus transmission

Zika virus

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2021 WHO Consolidated guidelines on HIV
prevention, testing, treatment, service delivery
and monitoring

HIV

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2020 WHO Improving early childhood
development

Earlychildhooddevelopment

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Condition

Absent or died

Birth trauma or complications

2023 WHO Guideline on the prevention andmanagement of wasting and nutritional
oedema in infants and children under 5 years

Title of document

Breastfeeding conditions

Preterm morbidity

Risk factors related to the mother

Disability or congenital abnormality

Risk factors related to theinfantPreterm

Nutritional
status of infant

Low birth weight

Small and/or sick newborn
Congenital illness (including HIV, TB)

Vulnerability factors

Guidelines

43

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AdolescentMultipara

Absent or diedAnaemia

Primipara

Birth spacing

Low Mid-upper arm circumference–

Birth complication–

Social or contextual factors–

Mental health–

Breastfeeding conditions

Nutritional oedema–

Physical health

Low anthropometry–

Mental health

Poor ponderal growth–

Hospitalisation history

Small for gestational age–

Neurodevelopment concerns

Birth trauma or complications–

Not breastfed

Preterm morbidity–

Risk factors related to the mother

Illness

Disability or congenital abnormality

Risk factors related to theinfantPreterm

Condition

Nutritional
status of infant

Low birth weight

Title of document

Small and/or sick newborn
Congenital illness (including HIV, TB)

Vulnerability factors

Breastfeeding difficulties

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

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Guidelines
2018 WHO Guideline: Counselling of women to
improve breastfeeding practices

Breastfeeding

2016 WHO Paediatric emergency triage,
assessment and treatment (ETAT)

Critically ill
child

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2015 WHO Recommendations on interventions
to improve preterm birth outcomesPreterm●2015 WHO Guideline: Managing possible serious
bacterial infection in young infants whenreferral is not feasible

Ill child2012 WHO Recommendations for managementof common childhood conditions

Ill child2012 WHO Guidelines on basic newborn
resuscitation

Newborn
resuscitation

Guidance documents
2022 WHO Guide for integration of perinatal
mental health in maternal and child healthservices

Perinatal
mental health2022 UNICEF, University of Pretoria Feeding
preterm and low-birthweight newborns

Preterm, Lowbirth weight

44

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Preterm morbidity

Birth trauma or complications

Small for gestational age

Poor ponderal growth

Low anthropometry

Nutritional oedema

Breastfeeding difficulties

Illness

Not breastfed

Neurodevelopment concerns

Hospitalisation history

Mental health

Physical health

Breastfeeding conditions

Mental healthSocial or contextual factors

Birth complication

AdolescentMultipara

Absent or diedAnaemia

Primipara

Birth spacing

Low Mid-upper arm circumference

Risk factors related to the mother

Disability or congenital abnormality

Risk factors related to theinfantPreterm

Nutritional
status of infant

Low birth weight

Small and/or sick newborn
Congenital illness (including HIV, TB)

Vulnerability factors

2022 WHO-Europe Pocketbook of primary healthcare for children and adolescents

Ill child

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2022 SPOON Identifying feeding difficulties in
infants – guidelines for healthcare professionals

Feedingdifficulties

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2022 SPOON Screening children for feeding
difficulties

Feedingdifficulties

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2022 UNICEF Integrating early detection andtreatment of child wasting into routine primary
health care services

Wasting

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2022 WHO Operational handbook on
tuberculosis. Module 5: Management oftuberculosis in children and adolescents

Tuberculosis

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2021 ENN, LSHTM MAMI Care Pathway Package,
Version 3 (guiding framework)

Small andnutritionallyat risk infants
and theirmothers

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2020 WHO, UNICEF The Baby Friendly Hospital
Initiative for small, sick and preterm newborns

Breastfeeding

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Guidance documents

45

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review

Low anthropometry

Nutritional oedema

Breastfeeding difficulties

Illness

Not breastfed

Neurodevelopment concerns

Hospitalisation history

Mental health

Physical health

Mental healthSocial or contextual factors

Birth complication

AdolescentMultipara

Absent or diedAnaemia

Primipara

Birth spacing

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2015 WHO, UNICEF, USAID Caring for newborns
and children in the community: planning
handbook for programme managers andplanners

Newborn care
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2014 WHO-Europe Hospital care for mothers
and newborn babies: quality assessment andimprovement tool

Newborn care

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Ill child

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Low Mid-upper arm circumference

Poor ponderal growth●

Condition

Breastfeeding conditions

Birth trauma or complications●

Title of document

Small for gestational age

Preterm morbidity

Risk factors related to the mother

Disability or congenital abnormality

Risk factors related to theinfantPreterm

Nutritional
status of infant

Low birth weight

Small and/or sick newborn
Congenital illness (including HIV, TB)

Vulnerability factors

Guidance documents
Manuals
2020 Partners in Health, UNICEF Early Childhood
Development Support for High-Risk Infants

Preterm, Lowbirth weight2019 WHO Integrated Management ofChildhood Illness of the sick young infant age
up to 2 months. Chart booklet

Ill child2018 IASC Field Manual on Reproductive Healthin Humanitarian Settings46

Invisible pursuit: Global policy guidance on care of vulnerable infants under six months and their mothers – A scoping review–

Ill child

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2003 WHO Kangaroo mother care: a practical
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Newborn care

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Birth spacing–

Primipara–

Anaemia–

Absent or died–Multipara

Hospitalisation history–

AdolescentNot breastfed–

Birth complication

Illness–

Social or contextual factors

Breastfeeding difficulties–

Mental health

Nutritional oedema–

Breastfeeding conditions

Low anthropometry●

Physical health

Poor ponderal growth–

Risk factors related to the mother

Mental health

Small for gestational age–

Condition

Neurodevelopment concerns

Birth trauma or complications–

Title of document

Disability or congenital abnormality

Preterm morbidity

Risk factors related to theinfantPreterm

Nutritional
status of infant

Low birth weight

Small and/or sick newborn
Congenital illness (including HIV, TB)

Vulnerability factors

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Manuals
2014 Christian Blind Mission (CBM) Recognising
impairments at birth

Newborn care2013 WHO Pocketbook of hospital care forchildren● = vulnerability factor covered; – = vulnerability factor not covered; n/a = not applicable.

47●

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