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Care Giving

The document discusses the significant role of caregivers in supporting marginalized children with disabilities, highlighting the challenges they face such as psychological stress and financial burdens. It emphasizes the need for tailored support programs and policies that recognize caregivers' contributions and rights, particularly in low-income and middle-income countries. The document calls for the development of national action plans and community-based interventions to improve caregiver support and accessibility to services.

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0% found this document useful (0 votes)
24 views3 pages

Care Giving

The document discusses the significant role of caregivers in supporting marginalized children with disabilities, highlighting the challenges they face such as psychological stress and financial burdens. It emphasizes the need for tailored support programs and policies that recognize caregivers' contributions and rights, particularly in low-income and middle-income countries. The document calls for the development of national action plans and community-based interventions to improve caregiver support and accessibility to services.

Uploaded by

kashmir laxamana
Copyright
© © All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
Available Formats
Download as PDF, TXT or read online on Scribd

Comment

to strengthen public health and health-care systems; 4 Nanayakkara A, Boucher H, Fowler Jr V, Jezek A, Outterson K, Greenberg DE.
Antibiotic resistance in the patient with cancer: escalating challenges and
and collaborating to expand access to antimicrobials, paths forward. CA Cancer J Clin 2021; 71: 488–504.
diagnostics, and innovative new products. Each country 5 Jona O, Irwin A, Berthe F, Le Gall F, Marquez P. Drug-resistant infections:
a threat to our economic future (vol 2): final report. World Bank. 2017. http://
can advance multisectoral coordination by developing, documents.worldbank.org/curated/en/323311493396993758/final-report
(accessed Aug 12, 2024).
financing, and implementing AMR National Action Plans
6 Kuzin I, Matskov O, Bondar R, et al. Notes from the field: responding to the
that take a One Health approach to addressing AMR. wartime spread of antimicrobial-resistant organisms—Ukraine, 2022.
MMWR Morb Mortal Wkly Rep 2023; 72: 1333–34.
Investment through global health financing bodies 7 San Lio R, Favara G, Maugeri A, Barchitta M, Agodi A. How antimicrobial
towards tackling AMR would help ensure every country resistance is linked to climate change: an overview of two intertwined global
challenges. Int J Environ Res Public Health 2023; 20: 1681–98.
can implement a minimum set of core actions—including 8 Cohn J, Mendelson M, Kang S, Shafiq N, Boszczowski I, Laxminarayan R.
the proven, cost-effective prevention approaches Accelerating antibiotic access and stewardship: a new model to safeguard
public health. Lancet Infect Dis 2024; 24: e584–90.
described above—to prevent antimicrobial-resistant 9 Patel T, Sati H, Lessa F, et al. Defining access without excess: expanding
infections, preserve the effectiveness of antimicrobials, appropriate use of antibiotics targeting multidrug-resistant organisms.
Lancet Microbe 2024; 5: e93–98.
and strengthen the preparedness of health-care systems. 10 WHO. Global Strategy on Infection Prevention and Control. 2023. https://
www.who.int/publications/m/item/global-strategy-on-infection-
These investments keep people and animals healthier, prevention-and-control (accessed Aug 12, 2024).
contribute to food security, protect the environment, 11 Schreiber P, Sax H, Wolfensberger A, Clack L, Kuster S. The preventable
proportion of healthcare-associated infections 2005–2016: systematic
and help safeguard economies. This year’s UNGA High- review and meta-analysis. Infect Control Hosp Epidemiol 2018; 39: 1277–95.
level Meeting on AMR will be pivotal in harnessing 12 Weets C, Katz R. Global approaches to tackling antimicrobial resistance:
a comprehensive analysis of water, sanitation and hygiene policies.
political momentum to enable all countries to accelerate BMJ Glob Health 2024; 9: e013855–65.
implementation of AMR interventions. We do not want 13 Fuhrmeister E, Harvey A, Nadimpalli M, et al. Evaluating the relationship
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more. 14 Kalanxhi E, Roberts N, Miller L, Bahati F, Laxminarayan R. The value of
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The findings and conclusions in this Comment are those of the authors and do middle-income countries. One Health Trust. 2023. https://onehealthtrust.
not necessarily represent the official position of the US Centers for Disease org/wp-content/uploads/2023/10/OHT-Report_Dec-8_final_Linked-1.pdf
Control and Prevention. We declare no competing interests. (accessed Aug 12, 2024).
15 Mangalea M, Laufer Halpin A, Haile M, Elkins C, McDonald L. Decolonization
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HEO); CDC Global Health Center, Atlanta, GA, USA (KL, JF); CDC Immediate Office
18 UNAIDS. Global HIV & AIDS statistics fact sheet. 2024. https://www.unaids.
of the Director, Atlanta, GA, USA (HZ) org/en/resources/fact-sheet (accessed Aug 12, 2024).
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Curr Opin Microbiol 2019; 51: 72–80. sheets/detail/malaria (accessed Aug 12, 2024).
2 Centers for Disease Control and Prevention. 2022 Special report: COVID-19— 20 Global Fund to Fight AIDS, Tuberculosis and Malaria. Annual financial report
U.S. impact on antimicrobial resistance. 2022. https://www.cdc.gov/ 2023. 2023. https://archive.theglobalfund.org/annual-reports/ (accessed
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The role of caregivers in mental health and child


development policy and practice
As the health community reflects on World Caring Day have a crucial role in supporting some of the world’s Published Online
June 5, 2024
and the UK’s National Carers Week in June, 2024, it is most marginalised children. However, caregivers face https://doi.org/10.1016/
important to recognise the contribution of families considerable challenges, including psychological stress,2 S0140-6736(24)01095-X

caring for the 240 million children with disabilities mental health conditions,3 financial burdens, stigma, and
worldwide.1 These caregivers, including parents, discrimination,4 which impact their wellbeing and ability
grandparents, siblings, and extended family members, to provide care effectively.5 Moreover, the responsibilities

www.thelancet.com Vol 404 September 21, 2024 1085


Comment

limited evaluation of long-term effectiveness and


cost-effectiveness. Implementation research should
be prioritised to understand the factors needed for
effective and sustainable impact at scale, with clear
theories of change, standardised outcome measures,
long-term follow-up, and cost-effectiveness analyses.
Where programmes are in place in LMICs, missing or
dysfunctional referral pathways can restrict access to
care and support for caregivers. Additionally, some
groups may be sidelined from programmes. For
example, programmes are not usually tailored to the
preferences of fathers and male caregivers, and their
Westend61/Getty Images

circumstances, reflecting societal expectations and


stereotypes regarding paternal roles in caregiving. It
is crucial to progress beyond treating fathers as mere
companions to mothers by developing father-inclusive
of caregivers often conflict with other social roles, such as caregiver interventions that actively support men as co-
partnerships, parenting, education, and employment.2 beneficiaries.13
The difficulties that caregivers face are generally To scale up peer support groups and networks, health
pronounced in low-income and middle-income countries policies and systems must adapt to address the needs
(LMICs), given the constrained role of statutory services of caregivers of children with disabilities. One promising
in providing support, and that children are ten times approach involves implementing policy provisions that
more likely to be disabled than to die before their fifth endorse community-based interventions. For instance,
birthday.6 A fundamental shift is needed in how caregiver an inclusive early child development programme in
support is approached globally, one that acknowledges Addis Ababa prioritises marginalised families and shows
caregivers’ contributions to society, addresses their how policy provisions can bolster caregiver support
rights, and recognises their own support needs. within the broader health-care system in Ethiopia.14
Fortunately, there are contextually appropriate This programme includes comprehensive home visits by
interventions to help address these challenges. Peer community members known as coaching mothers who
support groups and networks offer effective approaches also facilitate access to essential services for all children
to health promotion and improved short-term younger than 6 years in Addis Ababa.14 Public–private
psychosocial functioning for caregivers.7 Additionally, partnerships, as well as collaborations with the third
in many settings these programmes are adopted by sector and public entities, can contribute to the provision
caregivers after implementation, providing further of comprehensive support for caregivers.
opportunities for social connectedness and resource Crucially, programmes are best designed and most
mobilisation, as has been seen in Ghana8 and Kenya.9 sustainable when caregivers and people with disabilities
Despite providing vital support to caregivers, peer co-develop and facilitate these groups and networks.
interventions are not routinely available because of This collaborative, user-led approach fosters inclusivity,
factors such as fragmented mental health and child empowers participants, and leverages first-hand
development services.10,11 Insufficient accessible, experiences, leading to tailored solutions to address
formal early childhood intervention services and social their challenges.15 Initiatives that are largely community
support for caregivers in LMICs leave many caregivers or civil society organisation led, such as those provided
without adequate support as their expectations for by Shonaquip Social Enterprise in South Africa,16 Baby
their child’s future are altered.12 Moreover, there Ubuntu peer support programmes in Uganda,17 and Carers
is limited inclusion of caregivers’ voices in policies UK in the UK, have potential for long-term positive impact
and programmes that are designed to impact their on caregivers’ lives if adequately funded and prioritised.
lives. Barriers to implementation and scale include Low spending on mental health and social care services

1086 www.thelancet.com Vol 404 September 21, 2024


Comment

in LMICs by governments and non-governmental disability inclusion. AHA is an employee of LEGO and EM an employee of CHAI. JE
declares no competing interests.
organisations constrains caregiver support programme
development,18 especially in poorer, rural areas where *Tracey Smythe, Julian Eaton, Adanech Abiebie,
needs are also higher.19 Looking ahead, priority actions for Andrea Hernandez Arriaga, Emily Miner
[email protected]
governments to incorporate caregivers of children with
Division of Physiotherapy, Department of Health and Rehabilitation Sciences,
disabilities in national systems must include developing Stellenbosch University, Cape Town, South Africa (TS); International Centre for
and financing of national action plans for early detection Evidence in Disability (TS) and Centre for Global Mental Health (JE), London
School of Hygiene & Tropical Medicine, London WC1E 7HT, UK; CBM Global
of children with disabilities that also provide support Disability Inclusion, Cambridge, UK (JE); Office of Mayor, Addis Ababa, Ethiopia
for their caregivers, and establishing measurable (AA); LEGO Foundation, Billund, Denmark (AHA); Clinton Health Access
Initiative, Boston, MA, USA (EM)
targets. These key performance indicators are required
1 UNICEF. Seen, counted, included: using data to shed light on the well-
to monitor and improve policies, financing, advocacy, being of children with disabilities. 2022. https://data.unicef.org/resources/
children-with-disabilities-report-2021/ (accessed May 30, 2024).
and services. For instance, in 2007, Chile implemented 2 Haley WE, Elayoubi J. Family caregiving as a global and lifespan public
a successful national early childhood development health issue. Lancet Public Health 2024; 9: e2–3.
3 Scherer N, Verhey I, Kuper H. Depression and anxiety in parents of children
programme, supported by effective developmental with intellectual and developmental disabilities: a systematic review and
household surveys for children younger than 5 years.20 In meta-analysis. PLoS One 2019; 14: e0219888.
4 Mkabile S, Garrun KL, Shelton M, Swartz L. African families’ and caregivers’
2019, data gathered as part of the programme indicated experiences of raising a child with intellectual disability: a narrative
that the programme was not effectively reaching children synthesis of qualitative studies. Afr J Disabil 2021; 10: 827.
5 Loucaides EM, Zuurmond M, Nemerimana M, et al. Livelihood support for
with developmental disabilities. The programme has caregivers of children with developmental disabilities: findings from a
scoping review and stakeholder survey. Disabil Rehabil 2024; 46: 293–308.
since adjusted to ensure improved access to assistive
6 Global Research on Developmental Disabilities Collaborators. Accelerating
technology and communication services for caregivers progress on early childhood development for children under 5 years with
disabilities by 2030. Lancet Glob Health 2022; 10: e438–44.
and children with disabilities.20 Expanding and developing 7 Barlow J, Coren E. The effectiveness of parenting programs: a review of
a community workforce with the appropriate skills Campbell reviews. Res Soc Work Pract 2018; 28: 99–102.
8 Zuurmond M, Seeley J, Shakespeare T, Nyante GG, Bernays S. Illuminating
to provide support groups and networks can bridge the empowerment journey of caregivers of children with disabilities:
accessibility gaps. To overcome scaling up or integration understanding lessons learnt from Ghana. Afr J Disabil 2020; 9: 705.
9 Bunning K, Gona JK, Newton CR, et al. Empowering self-help groups for
barriers, strategic involvement of all stakeholders, caregivers of children with disabilities in Kilifi, Kenya: impacts and their
including decision makers and service users, is crucial underlying mechanisms. PLoS One 2020; 15: e0229851.
10 Black MM, Walker SP, Fernald LCH, et al. Early childhood development
for sustainability. Services to support caregivers must coming of age: science through the life course. Lancet 2017; 389: 77–90.
be evidence-based, locally relevant, and systematically 11 Bolton P, West J, Whitney C, et al. Expanding mental health services in
low-income countries: a task-shifting framework for delivery of
assessed to disseminate practical recommendations. comprehensive, collaborative, and community-based care.
Glob Ment Health (Camb) 2023; 10: e16.
Governments need policies and action plans to 12 He C, Evans N, Graham H, Milner K. Group-based caregiver support
support caregivers, which should be translated into interventions for children living with disabilities in low-and-middle-income
countries: narrative review and analysis of content, outcomes, and
budget allocations necessary to implement the implementation factors. J Glob Health 2024; 14: 04055.
support effectively. Thus, it is crucial for international 13 Jeong J. Redesigning and delivering inclusive parenting interventions for
fathers. Lancet Glob Health 2021; 9: e596.
organisations such as WHO, the World Bank, and 14 Office of the Mayor of Addis Ababa. Initiative detail: early childhood
development (ECD). 2024. https://www.addismayor.gov.et/index.php/
UNICEF to strengthen normative guidance to integrate initiatives/early-childhood-development-ecd (accessed May 23, 2024).
peer support groups and networks within national 15 Bird M, McGillion M, Chambers EM, et al. A generative co-design
framework for healthcare innovation: development and application of an
health strategies, and facilitate system restructuring end-user engagement framework. Res Involv Engagem 2021; 7: 12.
to bolster national governments and civil society 16 Trafford Z, van der Westhuizen E, McDonald S, Linegar M, Swartz L. More
than just assistive devices: how a South African social enterprise supports
organisations in their endeavours to support caregivers. an environment of inclusion. Int J Environ Res Public Health 2021; 18: 2655.
These organisations can have a catalytic role in 17 Nanyunja C, Sadoo S, Kohli-Lynch M, et al. Early care and support for young
children with developmental disabilities and their caregivers in Uganda: the
providing overarching leadership, coordination, and Baby Ubuntu feasibility trial. Front Pediatr 2022; 10: 981976.
accountability mechanisms to ensure the equitable 18 Freeman M. Investing for population mental health in low and middle
income countries—where and why? Int J Ment Health Syst 2022; 16: 38.
provision of support for caregivers worldwide. 19 Kakuma R, Minas H, van Ginneken N, et al. Human resources for mental health
care: current situation and strategies for action. Lancet 2011; 378: 1654–63.
TS receives salary funding from the UK National Institute for Health Research
(NIHR301621). AA is the Mayor of Addis Ababa and leads the inclusive child 20 Breinbauer C, Vidal V, Molina P, Trabucco C, Gutierrez L, Cordero M. Early
childhood development policy in Chile: progress and pitfalls supporting
development programme in Addis Ababa that is discussed in this Comment; this
children with developmental disabilities toward school readiness.
programme is not directly funded by LEGO or the Clinton Health Access Initiative
Front Public Health 2022; 10: 983513.
(CHAI), however, CHAI through a LEGO grant is providing technical assistance on

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