{"id":3723,"date":"2024-02-29T14:57:57","date_gmt":"2024-02-29T14:57:57","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/ighi\/?p=3723"},"modified":"2024-02-29T15:17:15","modified_gmt":"2024-02-29T15:17:15","slug":"ukraine-better-care-for-children-with-complex-long-term-health-needs","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/ighi\/2024\/02\/29\/ukraine-better-care-for-children-with-complex-long-term-health-needs\/","title":{"rendered":"Ukraine: Better care for children with complex long-term health needs"},"content":{"rendered":"

Our third blog post for the two-year anniversary of the invasion of Ukraine addresses the importance of prioritising better care for children with complex long-term health needs.<\/em><\/p>\n

This is part of\u00a0a series of blog posts sharing insights from our Ukraine Health Summit<\/a>, hosted in partnership with the British Red Cross to further efforts in supporting the delivery and restoration of health services in Ukraine. <\/em>This piece is written by Alexandra Shaw, Institute of Global Health Innovation, Imperial College London, with colleagues.<\/em><\/p>\n

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Ukraine Health Summit: attendees chatting<\/figcaption><\/figure>\n

In Ukraine, many children continue to be cared for in institutions. Estimates vary widely and suggest that between 90,000-200,000 children reside in these institutions, and approximately 20,000-50,000 of them have disabilities.<\/span>1<\/span><\/a> 2<\/span><\/a> <\/span><\/sup><\/p>\n

Children have a range of disabilities including congenital abnormalities of the nervous and cardiovascular systems, foetal alcohol spectrum disorders, genetic disorders and chromosomal abnormalities, visual impairments, cerebral palsy and epilepsy.<\/span>3 \u00a0<\/span><\/span><\/sup><\/a>Factors impacting institutionalisation include poor infrastructure for children with disabilities, including education and community-based therapy services. There is a lack of crucial services, including rehabilitation and palliative care, and support in the community, making caring for a child with complex health needs even more challenging. Social challenges also drive institutionalisation including poverty, social stigma and the lack of support means families are left isolated.3<\/span><\/span><\/sup><\/a> An estimated 90% of children placed in institutions have parents or family but are placed in institutions because of the challenges of caring for them in the community. Other factors include the inability of parents to care for their children, neglect or substance abuse.<\/span>2<\/span><\/a> <\/sup><\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

Impact of institutionalisation<\/span><\/b>\u00a0<\/span><\/p>\n

In 2019, the 74th<\/span> UN General Assembly<\/span> adopted the resolution on \u2018Rights of the child\u2019<\/span> which urges that family and community-based care should be promoted over placement in institutions, and that children with disabilities should enjoy all human rights and fundamental freedoms on an equal basis with other children, including access to a family life.4 <\/span>Children living in institutional environments can suffer significant harm including the impact on their quality of life, their ability to adapt to society, mental health and overall development.5<\/span>\u00a0Facilities often fail to meet basic needs, address individual requirements and provide emotional and social stimulation. <\/span><\/p>\n

Institutionalisation can lead to poor physical and mental health outcomes, stunting and a lack of development from inadequate nutrition, and infectious disease. Children who have been institutionalised can be left with difficulties processing and integrating sensory information, poor language development, damaging behaviours and significantly shortened life expectancy.6<\/span>\u00a0Staff to child ratios are often inadequate, leading to inappropriate methods of restraint, and a lack of supervision means children are not provided with adequate sanitary care, or assistance with feeding.2<\/span><\/a><\/sup><\/span><\/p>\n

Reform and impact of war<\/b><\/span><\/p>\n

Before the war, the government had adopted the National Strategy on Reform of the Institutional Care System (2017-2026), however there have been delays in implementation and children with disabilities have been excluded included in these reforms.7<\/span><\/span> The war has made the situation for children with complex long-term health needs even more desperate. Whilst children with more mild disabilities are being evacuated, many children have been moved from facilities in the east of Ukraine to inadequate facilities in the west. <\/span>This had led to overcrowding, further reduced staff ratios, and a lack of medical records leaving staff looking after children with no background information about their condition and care needs<\/span>.8 <\/span><\/a><\/span><\/p>\n

In some cases, children have been returned to their families without support or guidance to ensure the child\u2019s health needs are adequately met.1<\/span><\/a><\/sup><\/span> The European Commission has provided <\/span>230 million in humanitarian aid<\/span> to the Ukrainian government which brings an opportunity to ensure disabled children benefit from <\/span>the assistance<\/span> provided to Ukraine.<\/span>9<\/span><\/span><\/sup><\/a><\/p>\n

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Ukraine Health Summit: Dr Ulana Suprun<\/figcaption><\/figure>\n

Moving forward<\/span><\/b>\u00a0<\/span><\/p>\n

There is still progress to be made to improve care for children with complex health needs in Ukraine. A unified approach is required which clearly defines the responsibilities and powers of government authorities and local organisations to apply standards to protect children\u2019s rights and care. Key recommendations include<\/span>:<\/span><\/p>\n

\u00a0 \u00a0 \u00a01. Ref<\/span><\/i><\/b>orm for the provision of community based care<\/span><\/i><\/b>\u00a0<\/span><\/p>\n