Views

Appropriate
nutrition
support forchildren in
institutionbased care:
Is it toomuch toask?
Emily DeLacey
Director of Nutrition andHealth Services at Holt
InternationalThe images shown in this article featurevulnerable children in institution-based care.
Full consent was obtained and care wastaken to feature appropriate imagery which isrelevant and important to this story.

G

lobally, between 3.18 million and 9.42
million children are estimated to beliving in IBC (Desmond et al, 2020).
Prior to their admission into IBC,
many orphaned and vulnerable children may
have faced compounding adversities. Prenatal substance exposure, trauma, neglect, abuse,and conditions such as HIV/AIDS or disabilities are commonly observed, making these children more vulnerable to developing malnutrition (Dozier et al, 2012). Those who are at higher
risk – such as infants and children with disabilities – are overrepresented in IBC. More than one
in three children in IBC are estimated to be aged
under one year and one in four are estimated tohave a disability (DeLacey et al, 2020). However,despite there being a large population of vulnerable children in IBC, this group is still regularly excluded from global nutrition conversations,research, and programming, as well as from routine essential health and nutrition services, surveys, and policy decisions. Much about theirneeds remains unknown.
In 2021, we conducted research to fill theinformation gap on the nutrition-related epidemiology of children living in IBC across six
low- and middle-income countries: Mongolia,India, Ethiopia, Vietnam, China, and the Philippines (DeLacey et al, 2021). We used healthrecords collected from Holt International’s nutrition screening database between 2013 and2020. Data analysis of baseline nutrition screening from 2,926 children aged 0–18 years old revealed that children living within IBC were ex-

What we know:Children living in institution-based care (IBC) represent a forgotten population for thenutrition sector. This group remains particularly vulnerable to malnutrition, but many
data and service gaps exist, especially for those with disabilities who make up a quarterof children in IBC.

What this adds:

While global efforts focus on policies to discourage institutionalisation, more needs
to be done to realise the rights of children living in IBC to appropriate nutrition andthe engaged quality care needed to support growth and development. Good nutrition,growth, and development are, in turn, critical to home finding. This article highlights
the positive impacts that can be achieved through caregiver training, appropriate
feeding interventions, comprehensive monitoring and evaluation systems, and coherent
government engagement.

periencing underweight (34.1%), stunting(37.3%), and wasting (12.6%). Overweight/obesity (12%), small head circumference (31%), andanaemia (28.7%) were also present. These levelsof malnutrition were higher than any global or
low- and middle-income country averages.
As mentioned, a quarter of children in IBC
have a disability. Children with disabilities often
experience feeding difficulties, such as choking
and aspiration (inhalation of fluid or food intothe lungs) during mealtimes – which can increase the risk of infections, respiratory complications, morbidity, and mortality. The presenceof a feeding difficulty can also directly lead tomalnutrition. Children might resist eating due
to associated negative experiences or caregivers may provide nutritionally inadequate foods
that they hope are easier for the child to safely
swallow. Compounding this, feeding difficulties
and accompanying malnutrition can both cause
disability and exacerbate existing disabilities. In
another study using the same programme data,
we found that 11.3% of children in IBC had
feeding difficulties. Among children with disabilities, 29.7% had feeding difficulties compared
to 5.9% of children without disabilities. After
adjusting for confounders, we found that children with disabilities had five times greater relative risk of having feeding difficulties than those
without a disability (RR 5.08, 95% CI 2.65–9.7,p ≤ 0.001) (DeLacey et al, 2022a).
Collectively, these adversities greatly increase
the risk of children not reaching their full potential. As a child spends more time in IBC, there
are increasing consequences for their physical,cognitive, and interpersonal development.

Institution-based care: Ourcurrent reality

While not an ideal option, many orphaned andvulnerable children live in institutions that arenecessary for their immediate care or protection. Living conditions are often insufficient toaddress the individual needs of children. Thisis especially true for infants and children withdisabilities who rely on caregivers to meet basic
needs and who may be unable to convey theirrequirements. Facilities are frequently limited
in terms of staffing, funding, training, and re-sources. As such, caregivers have many competing priorities for their time, limiting responsive
caregiving.
Children living in IBC have the same rights
as other children in terms of appropriate nutrition, safe and enjoyable mealtimes, and the engaged quality care needed to support growthand development. These lifelong rights havebeen clearly outlined by several UN conventions and resolutions.
To date, global efforts have focused on policies to discourage institutionalisation – throughguidance from the European Union, UNICEF,
the World Health Organization, and others.
There has been little to no focus on addressing
the immediate needs and rights of children in
IBC or actions to improve their current circumstances (Hope and Homes for Children, 2020).
Funding remains insufficient for community initiatives to strengthen families, support caregivers, expand family-based care and respite care(short-term relief for primary caregivers), reunify families, and provide accessible healthand nutrition services. Some governments have
set up IBC reforms within their social welfare
systems and developed family-based care alternatives, such as foster care. But those too remain unacceptably under-resourced, especiallywhen children require highly specialised care orare malnourished.
Deinstitutionalisation is imperative to improving children’s developmental outcomes.
However, it does not guarantee that all children
experience optimal nutrition and health. Indeed, there is evidence that children and families in the same communities may be worse
off than children living in IBC (Whetten et al,2014). In these cases, IBC may offer more consistent access to nutritious meals and to thetrained caregivers, peer support, and resources to provide impactful education, healthcare,and specialised therapies. The transition awayfrom IBC is therefore nuanced and requires utmost care. Understanding the needs of families
within communities, and learning why abandonment happened, is clearly an important step
toward deinstitutionalisation. Otherwise, theprocess risks being detrimental if children are

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7Viewssubsequently returned or placed in unsafe environments that are unable to meet their needs(Desmond et al, 2020).
Finally, the opportunity for family placement remains limited, especially when children
are malnourished, sick, or unable to do activities of daily living. Disability-inclusive programming – from organisations such as Holt
International, the Ubuntu-hub, and MAITS– provide training for caregivers that can improve child health and development and provide support to caregivers in communities, IBC,Figure 1Quinn, moving with theaid of a walking frame
to support a congenital
disorder in IBC

and foster care. When children are well nourished, it speeds up the process and increases
the chance of placement in family-based care,family reunification, or adoption. This thendecreases the time children spend in care andavoids the time and cost of nutrition treatment
once they are placed with families.
As we work to strengthen families and support deinstitutionalisation efforts, we also needto address the current needs of the large andhighly vulnerable population who remain in IBC.

Addressing child nutrition ininstitution-based care

Through its child nutrition programme, Holt
International aims to both address the nutrition needs of children while they are in IBC
and ease subsequent life options outside IBC.
The programme includes comprehensive assessment, training, and monitoring and evaluation, and works in strong partnership withgovernment structures to support both implementation and scaling.

© Holt International

We provide training for caregivers and nutrition and feeding interventions for children
in institutions, foster care, and community programmes in nine countries, over 130 sites. Morethan 15,000 children have participated in theprogramme, with more than 7,000 caregivers
trained. We use a training of trainer’s approach to
improve individual- and site-level care practices.
We provide caregivers and site staff with training
on the following topics: providing safe and engaging mealtimes for children of different ages,
feeding and positioning, hygiene and sanitation,
growth monitoring, treating common illnesses,
anaemia screening and treatment, micronutrient deficiencies, and other development topics.
Within this, there is a special focus on the needsof infants and children with disabilities (DeLacey et al, 2022b).

© Holt International

Figure 2 Children being fed at a government-run institution in Vietnam

Quinn is highlighted by the yellow arrow (shown above)

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In addition to robust monitoring and evaluation systems, the programme uses an electronic nutrition screening system that tracks
growth measurements according to World
Health Organization growth charts, incidenceof illness, iron status and supplementation, andfeeding interventions for each child. The system automatically calculates malnutrition risk
and supports caregivers to examine children’s
nutrition and growth over time and instigatechanges to care if, for example, a child’s growth
chart trends flat or downwards.
Analysis of programme data has showed thepositive effects the child nutrition programme
has had on feeding difficulties. Among children with feeding difficulties at baseline, 33.1%
of 163 children with disabilities and 53.8% of
106 children without disabilities no longer had
feeding difficulties after one year of participation in the programme (DeLacey et al, 2022a).
This is likely related to improved caregiver
practices, better positioning, and support fromcaregivers to develop skills like self-feeding.
This analysis helped us to improve programme
implementation by identifying sites with persistent nutrition issues or additional need forsupport. Sharing these findings with global audiences has helped raise awareness about theneeds of children in IBC.

Quinn’s story: Frominstitution-based care to apermanent family

In 2012, Quinn was abandoned as a newborn
at a government-run institution in Vietnam by
her birth family. It is unknown whether she wasborn premature or low birth weight. Quinn has
arthrogryposis multiplex congenita, a condition
present from birth that affects muscle development and often limits mobility and the ability toself-feed (figure 1).

ViewsFigure 3 developing well,Quinn growing andpost-adoption

propriate training content and support would
allow caregivers to provide responsive caregiving, safe and enjoyable feeding, and support
for children with disabilities. There is increasing evidence that sensory stimulation, including touching or playing with food, plays animportant role in child development and recovery from malnutrition (Kamble et al, 2022).
Exploring the importance of engaging, enjoyable mealtimes is just one example of how appropriate caregiver training can improve nutrition outcomes. Another, more obvious focus
is on malnutrition screening and prevention.
Specifically, ensuring that caregivers are awareof sufficient, age-appropriate dietary intake
and can identify and treat malnutrition early and effectively. This requires high-quality
training and ongoing support.

© Quinn's FamilyInterventions to address malnutrition facedby children in IBC, especially infants and children with disabilities, must be part of the overall care plan and standard practice of every institution. Nutrition and feeding interventions
need to be integrated into an organisation’s
workflow. Institutions can then work to support staff with frequent training, provide environments to enable best practices (e.g. easily accessible handwashing stations), and clear
guidance on expectations.
Her health records indicate that, at 34 monthsof age, she was having difficulties chewing andwas fed infant formula from a bottle or spoonfed rice cereal. Her records also indicate that she
was frequently hospitalised and experienced fevers and nausea/vomiting. She was stunted (according to height-for-age), underweight (according to weight-for-age), and anaemic. She
was identified as malnourished and her caregivers received additional training from the nutrition programme staff on ways to improve herdiet and to help her safely develop her chewing
and feeding skills (figure 2). She was also provided with vitamins and iron supplementation.
In 2017, after four years and nine months ofliving in IBC, Quinn’s nutrition and health status had improved and she had learned to safely feed herself. She became healthy enough tobe adopted by a family. Her adoptive family received extensive training by Holt during theadoption process on strategies required to meetthe complex needs of a child with a disability, as
well as skills to build trust and a strong relationship with a child who has experienced adversities. With support from her family and occupational and physical therapy, Quinn no longer
has feeding or nutrition issues and is growing
and developing well (figure 3).

Avenues to improve nutrition
support in institution-basedcare

While we work to unite children with families,
children in IBC still need to receive appropriate
care and nutrition. With this in mind, we highlight some strategies that can improve nutrition
support in IBC.
Caregivers need more training. They usually have limited education on caring for children, especially those with disabilities. Ap-IBC sites should create systems of accountability to ensure consistent and routine assessment of the nutrition and health of individual
children and across a given site. Stronger routine monitoring and evaluation systems would
not only enable governments to have a better
picture of the number and conditions of children in IBC – thus raising visibility – but also
improve the implementation of programmes
supporting children in IBC. Such systems also
help institutions to provide transparent andobjective data, increasing accountability togovernments.
Additionally, governments and organisations need to ensure nutrition and health standards are key aspects of any family-based careprogrammes, such as foster care or kinship care.
Child protection, deinstitutionalisation, andfamily strengthening plans should also include
core components of nutrition, hygiene and sanitation, safe feeding, and support for caregivers.
As children become well nourished and caredfor, family-based care (foster care, kinship care)should be the next stage whenever possible, as apart of permanency planning (family reunification, adoption).
Responsibility for IBC, child nutrition anddevelopment, healthcare services, disability services, foster care, and child protection are often
spread across several government ministries.
Governments will need to develop a clear visionand collaborate across all departments and levels to ensure meaningful actions create environments that best support children’s development.
Increased funding to train caregivers and support family-based care is essential. With funding and resources aligned to policy and global
reforms in child welfare practices, deinstitutionalisation can become actionable and prevent thedetrimental consequences to children’s development seen in IBC.

Conclusion

Although not ideal, millions of children live in
IBC today, and their needs cannot be ignored.
We need to work to ensure all children live in
conditions that will support their full and adequate development. As the global community
works toward strengthening families and deinstitutionalising children, the children currently
in IBC need to be included in the conversation,
especially infants and those with disabilities.
Nutrition status and development are critical elements in finding appropriate homes for thesechildren. We therefore need to improve practices in IBC in the immediate term.
Governments need to better monitor children in IBC in their respective countries, including the large number with disabilities ormalnutrition. This is crucial so that we can better understand and respond to the needs of thisunique population. Evidence-based research offers a strong platform to raise awareness about
this highly vulnerable population and to advocate for their needs and rights to be met. By thesame token, sharing successful case studies andthe learnings from interventions also remain
powerful tools for change.
More can be done to ensure that children reach
their full potential, regardless of where they reside early in their lives.
For more information, please contact Emily
DeLacey at emilyd@holtinternational.org

References
DeLacey E, Tann C, Groce N et al (2020) The nutritional
status of children living within institutionalized care: A
systematic review. PeerJ, 8, e8484
DeLacey E, Hilberg E, Allen E et al (2021) Nutritional statusof children living within institution-based care: A retrospective analysis with funnel plots and control chartsfor programme monitoring. BMJ Open, 11, 12, e050371
DeLacey E, Allen E, Tann C et al (2022a) Feedingpractices of children within institution-based care: A
retrospective analysis of surveillance data. Maternal &Child Nutrition, 18, 3, e13352
DeLacey E, Tann C, Smythe T et al (2022b) Learningfrom the implementation of the child nutrition
program: A mixed methods evaluation of process.
Children, 9, 12Desmond C, Watt K, Saha A et al (2020) Prevalence andnumber of children living in institutional care: Global,regional, and country estimates. The Lancet Child &Adolescent Health, 4, 5, 370–377
Dozier M, Zeanah C, Wallin A et al (2012) Institutionalcare for young children: Review of literature and policy
implications. Social Issues and Policy Review, 6, 1, 1–25
Hope and Homes for Children (2020) Beyond institutional care: A roadmap for child protection and caresystem reform for governments in Latin America andthe Caribbean. hopeandhomes.org
Ivey R, Kerac M, Quiring M et al (2021) The nutritional
status of individuals adopted internationally as children: A systematic review. Nutrients, 13, 1, 245
Kamble N, Mathur R, Gavali V et al (2022) Sensory
stimulation and play therapy: Benefits in the treatment
of severe wasting in India? Field Exchange 68. https://www.ennonline.net//fex/68/sensorystimulationandplaytherapycombatseverewastinginindia
Whetten, K, Ostermann, J, Pence, BW et al (2014)
Three-year change in the wellbeing of orphaned andseparated children in institutional and family-basedcare settings in five low-and middle-income countries.
PLOS ONE, 9, 8, e104872.

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